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Sue Bowman, RN, OCN, CBCN, MSWLeesa Mattingly, RN, OCN
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5 Steps to Better Navigation Breast Cancer Navigation
Breakout Session
Sue Bowman RN OCN CBCN MSWBreast Oncology Nurse Navigator
Wellspan Health York Cancer Center
About the speakerhellip
bull Breast oncology nurse for 16 yearsbull Breast cancer survivor for 18 years bull Breast cancer navigator for 9 yearsbull Developed successful survivor programsbull Published author bull Conducting nursing research in breast cancer
survivorshipbull Member of several breast oncology groupsbull Certified in oncology and breast cancer care by ONSbull Enjoy being a navigator
Breakout Session Topics
Barriers Navigation Teams
Psychosocial Assessment
Best Practices
Survivorship Programs
What Is a Navigator
Translation ndash We Are ldquoCat Herdersrdquo
Cat Herding - Persuading a group of independently minded people to go in the same direction
Dr Harold Freeman
ldquoNavigators assure that individuals with cancer will receive timely diagnosis and treatmentrdquo
Dr Allan GibofskyProfessor of Public Health
Weill Cornell Medical College
ldquoBreast cancer is a complex disease causing disruption in the physical social psychological and spiritual aspects of caring It is the role of the navigator to pave the way for these individuals to access the necessary information that will make the journey less fearful and more understandablerdquo
Barrier-Focused Definitionbull Patient navigation is a barrier-
focused intervention that has the following common characteristicsndash Provided for a defined period of
timendash Has a start and endndash Targets the specific set of health
services requiredndash Identifies barriers and reduces
delays in accessing care
Sara Koslosky Inova Health Breast Care Nurse
Is a Standardized Navigator Definition a Practical Goal
YES NO Maybe
Actual Value of a Navigator
The true value of a successful navigator program is the ability to guide patients through the health system by removing barriers that prevent quality care
Critical Question 1bull How does a
navigator develop this ability to guide patients around or through barriers
Critical Question 2
bull How are barriers identified
Critical Question 3
bull How does a navigator resolve barriers
The answer ishellip
hellipsomething you have used your entire professional career
The Nursing Process TheoryDeveloped in 1961 by Ida Jean Orlando
Ida Orlando
The Focus of the Nursing Process
bull The Patient bull Improve care
by addressing the most pressing need first
bull 5-step process
Things to RememberhellipUse what you know works
bull Nurses and other navigators can use Orlandorsquos Nursing Process Theory to resolve patient barriers ndash successfully
bull Create your role and program to reflect your patientsrsquo barriers
bull Keep your role fluid
This is a new process
bull Navigators have become important members of the oncology care team
bull Navigation is a difficult task at best
bull Nurse navigation is still developing
bull Start small bull Be patient with yourself
5 Steps to Better NavigationUsing the Nursing Process
5 Steps to Better
Navigation
5 Steps to Better
Navigation
Assess
Assessment
Holistic Approach Whole Person
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
About the speakerhellip
bull Breast oncology nurse for 16 yearsbull Breast cancer survivor for 18 years bull Breast cancer navigator for 9 yearsbull Developed successful survivor programsbull Published author bull Conducting nursing research in breast cancer
survivorshipbull Member of several breast oncology groupsbull Certified in oncology and breast cancer care by ONSbull Enjoy being a navigator
Breakout Session Topics
Barriers Navigation Teams
Psychosocial Assessment
Best Practices
Survivorship Programs
What Is a Navigator
Translation ndash We Are ldquoCat Herdersrdquo
Cat Herding - Persuading a group of independently minded people to go in the same direction
Dr Harold Freeman
ldquoNavigators assure that individuals with cancer will receive timely diagnosis and treatmentrdquo
Dr Allan GibofskyProfessor of Public Health
Weill Cornell Medical College
ldquoBreast cancer is a complex disease causing disruption in the physical social psychological and spiritual aspects of caring It is the role of the navigator to pave the way for these individuals to access the necessary information that will make the journey less fearful and more understandablerdquo
Barrier-Focused Definitionbull Patient navigation is a barrier-
focused intervention that has the following common characteristicsndash Provided for a defined period of
timendash Has a start and endndash Targets the specific set of health
services requiredndash Identifies barriers and reduces
delays in accessing care
Sara Koslosky Inova Health Breast Care Nurse
Is a Standardized Navigator Definition a Practical Goal
YES NO Maybe
Actual Value of a Navigator
The true value of a successful navigator program is the ability to guide patients through the health system by removing barriers that prevent quality care
Critical Question 1bull How does a
navigator develop this ability to guide patients around or through barriers
Critical Question 2
bull How are barriers identified
Critical Question 3
bull How does a navigator resolve barriers
The answer ishellip
hellipsomething you have used your entire professional career
The Nursing Process TheoryDeveloped in 1961 by Ida Jean Orlando
Ida Orlando
The Focus of the Nursing Process
bull The Patient bull Improve care
by addressing the most pressing need first
bull 5-step process
Things to RememberhellipUse what you know works
bull Nurses and other navigators can use Orlandorsquos Nursing Process Theory to resolve patient barriers ndash successfully
bull Create your role and program to reflect your patientsrsquo barriers
bull Keep your role fluid
This is a new process
bull Navigators have become important members of the oncology care team
bull Navigation is a difficult task at best
bull Nurse navigation is still developing
bull Start small bull Be patient with yourself
5 Steps to Better NavigationUsing the Nursing Process
5 Steps to Better
Navigation
5 Steps to Better
Navigation
Assess
Assessment
Holistic Approach Whole Person
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Breakout Session Topics
Barriers Navigation Teams
Psychosocial Assessment
Best Practices
Survivorship Programs
What Is a Navigator
Translation ndash We Are ldquoCat Herdersrdquo
Cat Herding - Persuading a group of independently minded people to go in the same direction
Dr Harold Freeman
ldquoNavigators assure that individuals with cancer will receive timely diagnosis and treatmentrdquo
Dr Allan GibofskyProfessor of Public Health
Weill Cornell Medical College
ldquoBreast cancer is a complex disease causing disruption in the physical social psychological and spiritual aspects of caring It is the role of the navigator to pave the way for these individuals to access the necessary information that will make the journey less fearful and more understandablerdquo
Barrier-Focused Definitionbull Patient navigation is a barrier-
focused intervention that has the following common characteristicsndash Provided for a defined period of
timendash Has a start and endndash Targets the specific set of health
services requiredndash Identifies barriers and reduces
delays in accessing care
Sara Koslosky Inova Health Breast Care Nurse
Is a Standardized Navigator Definition a Practical Goal
YES NO Maybe
Actual Value of a Navigator
The true value of a successful navigator program is the ability to guide patients through the health system by removing barriers that prevent quality care
Critical Question 1bull How does a
navigator develop this ability to guide patients around or through barriers
Critical Question 2
bull How are barriers identified
Critical Question 3
bull How does a navigator resolve barriers
The answer ishellip
hellipsomething you have used your entire professional career
The Nursing Process TheoryDeveloped in 1961 by Ida Jean Orlando
Ida Orlando
The Focus of the Nursing Process
bull The Patient bull Improve care
by addressing the most pressing need first
bull 5-step process
Things to RememberhellipUse what you know works
bull Nurses and other navigators can use Orlandorsquos Nursing Process Theory to resolve patient barriers ndash successfully
bull Create your role and program to reflect your patientsrsquo barriers
bull Keep your role fluid
This is a new process
bull Navigators have become important members of the oncology care team
bull Navigation is a difficult task at best
bull Nurse navigation is still developing
bull Start small bull Be patient with yourself
5 Steps to Better NavigationUsing the Nursing Process
5 Steps to Better
Navigation
5 Steps to Better
Navigation
Assess
Assessment
Holistic Approach Whole Person
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
What Is a Navigator
Translation ndash We Are ldquoCat Herdersrdquo
Cat Herding - Persuading a group of independently minded people to go in the same direction
Dr Harold Freeman
ldquoNavigators assure that individuals with cancer will receive timely diagnosis and treatmentrdquo
Dr Allan GibofskyProfessor of Public Health
Weill Cornell Medical College
ldquoBreast cancer is a complex disease causing disruption in the physical social psychological and spiritual aspects of caring It is the role of the navigator to pave the way for these individuals to access the necessary information that will make the journey less fearful and more understandablerdquo
Barrier-Focused Definitionbull Patient navigation is a barrier-
focused intervention that has the following common characteristicsndash Provided for a defined period of
timendash Has a start and endndash Targets the specific set of health
services requiredndash Identifies barriers and reduces
delays in accessing care
Sara Koslosky Inova Health Breast Care Nurse
Is a Standardized Navigator Definition a Practical Goal
YES NO Maybe
Actual Value of a Navigator
The true value of a successful navigator program is the ability to guide patients through the health system by removing barriers that prevent quality care
Critical Question 1bull How does a
navigator develop this ability to guide patients around or through barriers
Critical Question 2
bull How are barriers identified
Critical Question 3
bull How does a navigator resolve barriers
The answer ishellip
hellipsomething you have used your entire professional career
The Nursing Process TheoryDeveloped in 1961 by Ida Jean Orlando
Ida Orlando
The Focus of the Nursing Process
bull The Patient bull Improve care
by addressing the most pressing need first
bull 5-step process
Things to RememberhellipUse what you know works
bull Nurses and other navigators can use Orlandorsquos Nursing Process Theory to resolve patient barriers ndash successfully
bull Create your role and program to reflect your patientsrsquo barriers
bull Keep your role fluid
This is a new process
bull Navigators have become important members of the oncology care team
bull Navigation is a difficult task at best
bull Nurse navigation is still developing
bull Start small bull Be patient with yourself
5 Steps to Better NavigationUsing the Nursing Process
5 Steps to Better
Navigation
5 Steps to Better
Navigation
Assess
Assessment
Holistic Approach Whole Person
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Translation ndash We Are ldquoCat Herdersrdquo
Cat Herding - Persuading a group of independently minded people to go in the same direction
Dr Harold Freeman
ldquoNavigators assure that individuals with cancer will receive timely diagnosis and treatmentrdquo
Dr Allan GibofskyProfessor of Public Health
Weill Cornell Medical College
ldquoBreast cancer is a complex disease causing disruption in the physical social psychological and spiritual aspects of caring It is the role of the navigator to pave the way for these individuals to access the necessary information that will make the journey less fearful and more understandablerdquo
Barrier-Focused Definitionbull Patient navigation is a barrier-
focused intervention that has the following common characteristicsndash Provided for a defined period of
timendash Has a start and endndash Targets the specific set of health
services requiredndash Identifies barriers and reduces
delays in accessing care
Sara Koslosky Inova Health Breast Care Nurse
Is a Standardized Navigator Definition a Practical Goal
YES NO Maybe
Actual Value of a Navigator
The true value of a successful navigator program is the ability to guide patients through the health system by removing barriers that prevent quality care
Critical Question 1bull How does a
navigator develop this ability to guide patients around or through barriers
Critical Question 2
bull How are barriers identified
Critical Question 3
bull How does a navigator resolve barriers
The answer ishellip
hellipsomething you have used your entire professional career
The Nursing Process TheoryDeveloped in 1961 by Ida Jean Orlando
Ida Orlando
The Focus of the Nursing Process
bull The Patient bull Improve care
by addressing the most pressing need first
bull 5-step process
Things to RememberhellipUse what you know works
bull Nurses and other navigators can use Orlandorsquos Nursing Process Theory to resolve patient barriers ndash successfully
bull Create your role and program to reflect your patientsrsquo barriers
bull Keep your role fluid
This is a new process
bull Navigators have become important members of the oncology care team
bull Navigation is a difficult task at best
bull Nurse navigation is still developing
bull Start small bull Be patient with yourself
5 Steps to Better NavigationUsing the Nursing Process
5 Steps to Better
Navigation
5 Steps to Better
Navigation
Assess
Assessment
Holistic Approach Whole Person
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Dr Harold Freeman
ldquoNavigators assure that individuals with cancer will receive timely diagnosis and treatmentrdquo
Dr Allan GibofskyProfessor of Public Health
Weill Cornell Medical College
ldquoBreast cancer is a complex disease causing disruption in the physical social psychological and spiritual aspects of caring It is the role of the navigator to pave the way for these individuals to access the necessary information that will make the journey less fearful and more understandablerdquo
Barrier-Focused Definitionbull Patient navigation is a barrier-
focused intervention that has the following common characteristicsndash Provided for a defined period of
timendash Has a start and endndash Targets the specific set of health
services requiredndash Identifies barriers and reduces
delays in accessing care
Sara Koslosky Inova Health Breast Care Nurse
Is a Standardized Navigator Definition a Practical Goal
YES NO Maybe
Actual Value of a Navigator
The true value of a successful navigator program is the ability to guide patients through the health system by removing barriers that prevent quality care
Critical Question 1bull How does a
navigator develop this ability to guide patients around or through barriers
Critical Question 2
bull How are barriers identified
Critical Question 3
bull How does a navigator resolve barriers
The answer ishellip
hellipsomething you have used your entire professional career
The Nursing Process TheoryDeveloped in 1961 by Ida Jean Orlando
Ida Orlando
The Focus of the Nursing Process
bull The Patient bull Improve care
by addressing the most pressing need first
bull 5-step process
Things to RememberhellipUse what you know works
bull Nurses and other navigators can use Orlandorsquos Nursing Process Theory to resolve patient barriers ndash successfully
bull Create your role and program to reflect your patientsrsquo barriers
bull Keep your role fluid
This is a new process
bull Navigators have become important members of the oncology care team
bull Navigation is a difficult task at best
bull Nurse navigation is still developing
bull Start small bull Be patient with yourself
5 Steps to Better NavigationUsing the Nursing Process
5 Steps to Better
Navigation
5 Steps to Better
Navigation
Assess
Assessment
Holistic Approach Whole Person
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Dr Allan GibofskyProfessor of Public Health
Weill Cornell Medical College
ldquoBreast cancer is a complex disease causing disruption in the physical social psychological and spiritual aspects of caring It is the role of the navigator to pave the way for these individuals to access the necessary information that will make the journey less fearful and more understandablerdquo
Barrier-Focused Definitionbull Patient navigation is a barrier-
focused intervention that has the following common characteristicsndash Provided for a defined period of
timendash Has a start and endndash Targets the specific set of health
services requiredndash Identifies barriers and reduces
delays in accessing care
Sara Koslosky Inova Health Breast Care Nurse
Is a Standardized Navigator Definition a Practical Goal
YES NO Maybe
Actual Value of a Navigator
The true value of a successful navigator program is the ability to guide patients through the health system by removing barriers that prevent quality care
Critical Question 1bull How does a
navigator develop this ability to guide patients around or through barriers
Critical Question 2
bull How are barriers identified
Critical Question 3
bull How does a navigator resolve barriers
The answer ishellip
hellipsomething you have used your entire professional career
The Nursing Process TheoryDeveloped in 1961 by Ida Jean Orlando
Ida Orlando
The Focus of the Nursing Process
bull The Patient bull Improve care
by addressing the most pressing need first
bull 5-step process
Things to RememberhellipUse what you know works
bull Nurses and other navigators can use Orlandorsquos Nursing Process Theory to resolve patient barriers ndash successfully
bull Create your role and program to reflect your patientsrsquo barriers
bull Keep your role fluid
This is a new process
bull Navigators have become important members of the oncology care team
bull Navigation is a difficult task at best
bull Nurse navigation is still developing
bull Start small bull Be patient with yourself
5 Steps to Better NavigationUsing the Nursing Process
5 Steps to Better
Navigation
5 Steps to Better
Navigation
Assess
Assessment
Holistic Approach Whole Person
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Barrier-Focused Definitionbull Patient navigation is a barrier-
focused intervention that has the following common characteristicsndash Provided for a defined period of
timendash Has a start and endndash Targets the specific set of health
services requiredndash Identifies barriers and reduces
delays in accessing care
Sara Koslosky Inova Health Breast Care Nurse
Is a Standardized Navigator Definition a Practical Goal
YES NO Maybe
Actual Value of a Navigator
The true value of a successful navigator program is the ability to guide patients through the health system by removing barriers that prevent quality care
Critical Question 1bull How does a
navigator develop this ability to guide patients around or through barriers
Critical Question 2
bull How are barriers identified
Critical Question 3
bull How does a navigator resolve barriers
The answer ishellip
hellipsomething you have used your entire professional career
The Nursing Process TheoryDeveloped in 1961 by Ida Jean Orlando
Ida Orlando
The Focus of the Nursing Process
bull The Patient bull Improve care
by addressing the most pressing need first
bull 5-step process
Things to RememberhellipUse what you know works
bull Nurses and other navigators can use Orlandorsquos Nursing Process Theory to resolve patient barriers ndash successfully
bull Create your role and program to reflect your patientsrsquo barriers
bull Keep your role fluid
This is a new process
bull Navigators have become important members of the oncology care team
bull Navigation is a difficult task at best
bull Nurse navigation is still developing
bull Start small bull Be patient with yourself
5 Steps to Better NavigationUsing the Nursing Process
5 Steps to Better
Navigation
5 Steps to Better
Navigation
Assess
Assessment
Holistic Approach Whole Person
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Is a Standardized Navigator Definition a Practical Goal
YES NO Maybe
Actual Value of a Navigator
The true value of a successful navigator program is the ability to guide patients through the health system by removing barriers that prevent quality care
Critical Question 1bull How does a
navigator develop this ability to guide patients around or through barriers
Critical Question 2
bull How are barriers identified
Critical Question 3
bull How does a navigator resolve barriers
The answer ishellip
hellipsomething you have used your entire professional career
The Nursing Process TheoryDeveloped in 1961 by Ida Jean Orlando
Ida Orlando
The Focus of the Nursing Process
bull The Patient bull Improve care
by addressing the most pressing need first
bull 5-step process
Things to RememberhellipUse what you know works
bull Nurses and other navigators can use Orlandorsquos Nursing Process Theory to resolve patient barriers ndash successfully
bull Create your role and program to reflect your patientsrsquo barriers
bull Keep your role fluid
This is a new process
bull Navigators have become important members of the oncology care team
bull Navigation is a difficult task at best
bull Nurse navigation is still developing
bull Start small bull Be patient with yourself
5 Steps to Better NavigationUsing the Nursing Process
5 Steps to Better
Navigation
5 Steps to Better
Navigation
Assess
Assessment
Holistic Approach Whole Person
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Actual Value of a Navigator
The true value of a successful navigator program is the ability to guide patients through the health system by removing barriers that prevent quality care
Critical Question 1bull How does a
navigator develop this ability to guide patients around or through barriers
Critical Question 2
bull How are barriers identified
Critical Question 3
bull How does a navigator resolve barriers
The answer ishellip
hellipsomething you have used your entire professional career
The Nursing Process TheoryDeveloped in 1961 by Ida Jean Orlando
Ida Orlando
The Focus of the Nursing Process
bull The Patient bull Improve care
by addressing the most pressing need first
bull 5-step process
Things to RememberhellipUse what you know works
bull Nurses and other navigators can use Orlandorsquos Nursing Process Theory to resolve patient barriers ndash successfully
bull Create your role and program to reflect your patientsrsquo barriers
bull Keep your role fluid
This is a new process
bull Navigators have become important members of the oncology care team
bull Navigation is a difficult task at best
bull Nurse navigation is still developing
bull Start small bull Be patient with yourself
5 Steps to Better NavigationUsing the Nursing Process
5 Steps to Better
Navigation
5 Steps to Better
Navigation
Assess
Assessment
Holistic Approach Whole Person
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Critical Question 1bull How does a
navigator develop this ability to guide patients around or through barriers
Critical Question 2
bull How are barriers identified
Critical Question 3
bull How does a navigator resolve barriers
The answer ishellip
hellipsomething you have used your entire professional career
The Nursing Process TheoryDeveloped in 1961 by Ida Jean Orlando
Ida Orlando
The Focus of the Nursing Process
bull The Patient bull Improve care
by addressing the most pressing need first
bull 5-step process
Things to RememberhellipUse what you know works
bull Nurses and other navigators can use Orlandorsquos Nursing Process Theory to resolve patient barriers ndash successfully
bull Create your role and program to reflect your patientsrsquo barriers
bull Keep your role fluid
This is a new process
bull Navigators have become important members of the oncology care team
bull Navigation is a difficult task at best
bull Nurse navigation is still developing
bull Start small bull Be patient with yourself
5 Steps to Better NavigationUsing the Nursing Process
5 Steps to Better
Navigation
5 Steps to Better
Navigation
Assess
Assessment
Holistic Approach Whole Person
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Critical Question 2
bull How are barriers identified
Critical Question 3
bull How does a navigator resolve barriers
The answer ishellip
hellipsomething you have used your entire professional career
The Nursing Process TheoryDeveloped in 1961 by Ida Jean Orlando
Ida Orlando
The Focus of the Nursing Process
bull The Patient bull Improve care
by addressing the most pressing need first
bull 5-step process
Things to RememberhellipUse what you know works
bull Nurses and other navigators can use Orlandorsquos Nursing Process Theory to resolve patient barriers ndash successfully
bull Create your role and program to reflect your patientsrsquo barriers
bull Keep your role fluid
This is a new process
bull Navigators have become important members of the oncology care team
bull Navigation is a difficult task at best
bull Nurse navigation is still developing
bull Start small bull Be patient with yourself
5 Steps to Better NavigationUsing the Nursing Process
5 Steps to Better
Navigation
5 Steps to Better
Navigation
Assess
Assessment
Holistic Approach Whole Person
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Critical Question 3
bull How does a navigator resolve barriers
The answer ishellip
hellipsomething you have used your entire professional career
The Nursing Process TheoryDeveloped in 1961 by Ida Jean Orlando
Ida Orlando
The Focus of the Nursing Process
bull The Patient bull Improve care
by addressing the most pressing need first
bull 5-step process
Things to RememberhellipUse what you know works
bull Nurses and other navigators can use Orlandorsquos Nursing Process Theory to resolve patient barriers ndash successfully
bull Create your role and program to reflect your patientsrsquo barriers
bull Keep your role fluid
This is a new process
bull Navigators have become important members of the oncology care team
bull Navigation is a difficult task at best
bull Nurse navigation is still developing
bull Start small bull Be patient with yourself
5 Steps to Better NavigationUsing the Nursing Process
5 Steps to Better
Navigation
5 Steps to Better
Navigation
Assess
Assessment
Holistic Approach Whole Person
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
The answer ishellip
hellipsomething you have used your entire professional career
The Nursing Process TheoryDeveloped in 1961 by Ida Jean Orlando
Ida Orlando
The Focus of the Nursing Process
bull The Patient bull Improve care
by addressing the most pressing need first
bull 5-step process
Things to RememberhellipUse what you know works
bull Nurses and other navigators can use Orlandorsquos Nursing Process Theory to resolve patient barriers ndash successfully
bull Create your role and program to reflect your patientsrsquo barriers
bull Keep your role fluid
This is a new process
bull Navigators have become important members of the oncology care team
bull Navigation is a difficult task at best
bull Nurse navigation is still developing
bull Start small bull Be patient with yourself
5 Steps to Better NavigationUsing the Nursing Process
5 Steps to Better
Navigation
5 Steps to Better
Navigation
Assess
Assessment
Holistic Approach Whole Person
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
The Focus of the Nursing Process
bull The Patient bull Improve care
by addressing the most pressing need first
bull 5-step process
Things to RememberhellipUse what you know works
bull Nurses and other navigators can use Orlandorsquos Nursing Process Theory to resolve patient barriers ndash successfully
bull Create your role and program to reflect your patientsrsquo barriers
bull Keep your role fluid
This is a new process
bull Navigators have become important members of the oncology care team
bull Navigation is a difficult task at best
bull Nurse navigation is still developing
bull Start small bull Be patient with yourself
5 Steps to Better NavigationUsing the Nursing Process
5 Steps to Better
Navigation
5 Steps to Better
Navigation
Assess
Assessment
Holistic Approach Whole Person
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Things to RememberhellipUse what you know works
bull Nurses and other navigators can use Orlandorsquos Nursing Process Theory to resolve patient barriers ndash successfully
bull Create your role and program to reflect your patientsrsquo barriers
bull Keep your role fluid
This is a new process
bull Navigators have become important members of the oncology care team
bull Navigation is a difficult task at best
bull Nurse navigation is still developing
bull Start small bull Be patient with yourself
5 Steps to Better NavigationUsing the Nursing Process
5 Steps to Better
Navigation
5 Steps to Better
Navigation
Assess
Assessment
Holistic Approach Whole Person
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
5 Steps to Better NavigationUsing the Nursing Process
5 Steps to Better
Navigation
5 Steps to Better
Navigation
Assess
Assessment
Holistic Approach Whole Person
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
5 Steps to Better
Navigation
5 Steps to Better
Navigation
Assess
Assessment
Holistic Approach Whole Person
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
5 Steps to Better
Navigation
Assess
Assessment
Holistic Approach Whole Person
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Assessment
Holistic Approach Whole Person
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Assessment
Holistic Approach Whole Person
Barriers
Systemic BarriersIndividual Barriers
Individual Strengths and Resources
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Nursing Diagnosis
K nowledge Deficit
Complexity of Care
Role ConflictLack of Support
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
PlanTake Baby Steps
Engage Patient in
the process
Ask the patient what her
expectations are
Available Support
Resources
Ask Patient what she
needs nowAct on that
Availabilty of nurse
navigator
Explain probable first step
Make suggestions
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Implementation bull Key Point Implementation is NOT only your responsibility You are NOT a ldquoGuardian Angelrdquo You are a facilitator Your patient is responsible for doing what he or she is able to do The goal is to complete recommended care create a partnership provide tools for growth and support the healing process
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Evaluate
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Evaluate
Ask patient how she thinks
things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Evaluate
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Evaluate
Compliance to
prescribed plan of care
Touch base with specifics Ask patient how
she thinks things are going
Contact
at key events in treatment
regular scheduled
tiimes
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
5 Steps to Better
Navigation
Assess
Nursing Diagnosis
Plan
Implement
Evaluate
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation
Case Study
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
How to Prepare for an Effective Initial Contact
bull Receive referralbull Review medical recordbull Gather appropriate resource materialsbull Focus on rapport buildingbull Use an assessment tool
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Assessment Tool
bull A comprehensive intake form includesndash Demographics amp contact informationndash Medical history amp provider informationndash Pathology resultsndash Existing support systemsndash Medications amp comorbiditiesndash Social roles amp responsibilitiesndash Health maintenance routinendash List of possible referralsndash Worksheet format
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Elderly Case Study Mary Physical Barriers
bull 78 years old post menopausalbull Thoraco-lumbar stenosisbull Arthritisbull Osteoporosisbull A-Fibbull Cataracts amp bilateral hearing aidesbull Thickness noted in left breastbull Invasive lobular carcinoma ER+ PR- HER-2 - 4
cm 3 positive nodes 1 micro-mets
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Case StudyMary Emotional Barriers
bull Depressionbull Anxietybull Isolationbull Spouse in long term care post recent CVAbull Reluctant to ask for helpbull One son 200 miles awaybull Accustomed to being in control of her life experiences
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Case StudyMary Support System Barriers
bull No living siblingsbull Spouse unavailablebull Son amp family not localbull Attends Sunday church servicesbull Lives alone in family homebull Does not drive in ldquobadrdquo weather or at nightbull Limited circle of friends
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Case StudyMary Knowledge Barriers
bull No personal experience with breast cancer
bull No known family history bull Unfamiliar with
screening treatment disease survivorship recommendations
bull Unaware of impact of treatment and healing issues
bull Unaware of community resources including cancer center
bull Incomplete understanding of medication use
bull Impending information overload
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Case StudyMary Financial Barriers
bull Car is 15 years oldbull Limited income bull Medicare amp
supplement health coverage
bull Able to make ends meet at this time no reserve
bull Sporadic grocery shopping
bull Ocassionally misses bill due dates
bull 12 year old dog requires frequent vet appts
bull Home repair ignored
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Case StudyMary Systemic Barriers
bull Complex medical systembull Cottage industry of carebull Treatment may require an escortbull Provider communication relies on phonebull Treatment may require travel in poor
weather or when dark
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Elderly Case StudyMary Personal Strengths amp Resources
bull Resourcefulbull Determinedbull Frugalbull Uses her small circle
of contacts wellbull Willing to help herselfbull Enjoys learning new
things
bull Reads and questions health care information
bull Asks questions on behalf of her spouse
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Use the 5-Step Nursing Process Theory to Develop an Effective Strategy
bull Assessbull Nursing diagnosisbull Plan bull Implementbull Evaluate
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Barrier Ball ActivityRemember the Nursing Process
1 Catch a Barrier Ball2 Recruit people near to you to
formulate a way to reduce that barrier3 Take 2 minutes to develop your plan
(Write it down)4 Pick one person to come to the
microphone state barrier and how to reduce this barrier
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Transportation Barrier
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Possible Transportation Approaches
bull Ask patient for her ideas
bull Neighborsbull Public transportation
programsbull Church groups
bull Cancer center programs
bull American Cancer Society
bull Investigate hospital resources
bull Establish a list of resources for navigator use
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Financial Barriers
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Possible Financial Approachesbull Ask her what help she
needs first bull Refer to financial counselor
if availablebull Contact local patient
advocacy programsbull Refer to food and clothing
banks bull Brainstorm with patient to
find additional ways to economize
bull Free Medicaid cell phone program
bull Work with patient finance rep for available options
bull Explore providersrsquo willingness to waive fees
bull Pharmaceutical programsbull National patient advocate
programsbull Establish a list of resources
for your future usebull Be sensitive to privacy
issues
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Healthcare Barriers
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Possible Complex Healthcare Approaches
bull Offer to attend appointments for support note taking advocacy
bull Explain steps before they happen
bull Anticipate barriersbull Provide verbal and written
information in incrementsbull Enlist help from PCP
bull Be available for questions and concerns
bull Collaboratively develop a way to be organized that matches her need
bull Be prepared to repeat information and present it in different ways
bull Establish a list of resources for your future use
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Psychosocial Barriers
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Possible Psychosocial Approaches
bull Establish rapport and positive regard
bull Explore adequate emotional support counseling medication
bull Offer social work services
bull Reinforce her strengths
bull Explore her current relationship with her spouse
bull Ask about provider gender preference
bull Social Work 101 ldquoMeet the patient where she isrdquo
bull Check your biases bull
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Remember the 5 Steps of the Nursing Process Theory for Better Navigation
bull Assess ndash Gather informationndash Use a tool
bull Nursing diagnosisndash Identify individual and
systemic barriersbull Plan
ndash Collaborative processndash Baby steps donrsquot expect
perfectionndash Focus on personal strengthsndash Donrsquot promise what you
canrsquot deliverndash Be patient
bull Implementndash ldquoAssistrdquo always ldquodordquo only
when your patient is unablendash Encourage independence
bull Evaluatendash Do YOU have a
knowledge deficit relating to her specific barriers
ndash Do YOU have a comprehensive understanding of womenrsquos developmental stages
ndash Evaluation never ends and results in continual
reassessment
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
The Multidisciplinary Navigation Team
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
The Multidisciplinary Navigation Team
bull Nurses cannot do this alonebull Remember the cat herdersbull Multidisciplinary services are indicated for an
optimal breast cancer experiencebull You already have a team of people available to
provide these servicesbull Volunteer vs paid employeesbull Virtual vs centrally located teambull You can create a team
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
InterdependenceMaking a Cheeseburger
bull Independent Cheeseburgersndash Raise the cattlendash Butcher and grind the
meatndash Bake the rollsndash Grow lettuce and tomatondash Make cheese amp age itndash Grow trees cut down
process for charcoalndash Time needed years
bull Interdependent Cheeseburgersndash Go to the grocery storendash Purchase hamburger
cheese rolls tomato lettuce charcoal ketchup mustard
ndash Return home amp preparendash Time needed hours
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Team MembersNonclinical Patient Navigators
bull They canndash Listenndash Access informationndash Connect to supportndash Encourage organization
skill developmentndash Address cultural amp
language barriers
bull They cannotndash Provide medical
informationndash Give opinions about
treatmentndash Give opinions of
healthcare providersndash Interfere with
providerpatient relationship
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Team MembersFinancial Counselor
bull Locate Medicare Medicaid programs
bull Organizational programs for support
bull Pharmaceutical programsbull Guide to economize
lifestylebull Assist with applications
for servicesbull May be able to organize
fundraising
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Team MembersOncology Dietitians
bull Counsel healthy nutrition through treatment
bull Provide guidance for plant-based diet after treatment
bull Provide nutritional supplements and reassurance
bull Supply facts about alternative or unconventional diets
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Team MembersOncology Social Workers
bull Logical essential and necessary
bull Assist with disability FMLA Social Security Medical Assistance
bull Connect to appropriate resources
bull Facilitate mental healthcare
bull Provide crisis intervention
bull Offer patient and family counseling
bull Provide support groupsbull Support other members
of the navigation teambull Psychosocial education
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Team MembersOther Potential Members
bull Research nursesbull Clergybull Imaging personnelbull Radiation surgical
medical oncologybull Complementary
medicine providers
bull Physical amp occupational therapists
bull Survivorship classesbull Support groupsbull Community membersbull Others
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
The Puzzle of Assembling the Right Team Activity
In 5 minutes bull Find your color-coded
puzzle piecebull Read your patient
comment or list of team members
bull Find the team member who matches your puzzle piece
bull Decide how your team will address this barrier
bull Can you add other resources or ideas
bull 3 teams may come to the microphone to share their barrier and describe team membersrsquo actions
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Focus on Psychosocial Assessment
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Focus on Psychosocial Assessment
bull What is distressbull Any emotional issue
which affects a personrsquos ability to ndash Cope with disease
treatment survivorshipndash Make informed decisionsndash Follow recommended
treatment
bull Breast cancer is a holistic experience
bull Distress is best managed by using the ldquoonion analogyrdquo
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Focus on Psychosocial Assessment
bull Why is this importantndash 33 of all patients
experience significant emotional distress
ndash 5 obtain helpndash Breast cancer survivors
commonly experience distress which interferes with coping
bull Psychosocial assessment will be required for cancer center accreditation
bull Distress is one of the 3 most common barriers1 Insurance amp out-of-
pocket expense2 Transportation3 Fear amp emotions
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Barriers Are Risk Factors for Distress
bull Low incomebull Less educationbull Unemployedbull Young agebull Hispanic ethnicitybull Non-English speakingbull Treatment side effectsbull Unstable support
systems
bull Preexisting mental illness
bull Substance abusebull Role confusionbull Endless number of
perceived barriers
ALL people have barriers
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Focus on Psychosocial Assessment in Navigation American College of Surgeons Commission on Cancer
bull General standards first published in 1930 to ensure quality cancer care
bull New standards September 2011
bull Voluntary accreditation includes patient care improvements amp outcomes through a team approach
bull Continuum of Care Services Standard 32ndash Screening of all patients
for distress amp psychosocial health needs
ndash Provide referral follow-up and re-evaluation
ndash Minimum of 1 screening per patient
ndash Use of standardized toolndash Documentation
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Focus on Psychosocial Assessment in Navigation
bull Institute of Medicine Cancer Care for the Whole Patientndash Screen all patientsndash Referral to appropriate
psychosocial services ndash Effective communicationndash Identify barriersndash Design and implement a plan
for carendash Coordinate care amp support
patientsndash Reassess and adjust the plan
of care
bull National Comprehensive Cancer Network
ldquoDistress should be recognized monitored and documented and treated promptly at all stages of the diseaserdquo
ndash Requires systemic follow-upndash Reassessment
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Focus on Psychosocial Assessment
bull The basics of the IOM NCCN and ACoS recommendations sound a lot like Orlandorsquos Nursing Process Theory
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Nurse Navigator Initial Contactbull Remember Use the 5-step Nursing Process Theorybull Be alert to the fluid nature of the processbull Use an assessment tool and document your findingsbull Collaborate with your patient to develop a care planbull Mental illness or instability may be exacerbated with
diagnosisndash Self-report observation medication list
bull Further assessment is neededndash Communicate with physicianndash Use the nursing process with frequent reassessment as tool for
maintaining supportndash Refer to appropriate psychosocial supportndash Use recommendations from IOM ACoS NCCN to guide your plan
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Need for Assessment Is Evidence Based
bull Will be required by ACoS CoC Standard 32 by 2015 for accreditation
bull Research Heilman amp Lackey (1991) Kilpatrick et al (1998) Sanson et al (2000)
bull High levels of unmet needs (barriers) ndash Increase distress levelsndash Decrease coping abilitiesndash Affect patient family caregivers providersndash Complicate family support hope and a sense of the future
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients
1 Hospital Anxiety amp Depression Scale
2 Distress Thermometer3 Single verbal question4 Psychological Distress
Inventory5 Combination Distress
and Impact Thermometers
6 Two verbal questions
bull All tools comparable in accuracy
bull Never a substitute for clinical assessment or management
bull Choose a tool based on ndash Acceptability ndash Effectivenessndash Cost
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Distress Thermometerbull Easy to usebull 20 seconds to completebull Pencil amp paperbull Scale 1-10bull High specificity and sensitivitybull Provides specific areas of potential barrier for
assessmentbull wwwnccnorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Conference Stress Gauge Activity
bull Find your Conference Stress Gauge
bull Take 1 minute to complete this tool
bull Share comments with the person next to you
bull Did this tool evaluate your current stress level accurately
bull Could you use the NCCN Distress Thermometer for your patients
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Best Practices in Navigation and Survivorship
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
What Are ldquoBest Practicesrdquo
bull Best Practices are generally accepted informally standardized techniques methods or processes that have proven themselves over time to accomplish given tasks
bull Often based on common sense when no firm guidelines exist
bull Best practices continue to evolve as change occurs
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Why Are Best Practices Valuable
bull Used to maintain qualitybull Used as an alternative to mandated
legislated standardsbull Based on self-assessmentbull Changeable and flexible bull Important aspect of accreditation standards
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
The key in adopting a best practice is being able to tailor it to your own organizationrsquos
needs
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Current Best Practice Resources
bull Design of Six Sigma (DFSS)ndash Business model for redesigning existing or new processesndash Prioritizes customer (patient) needsndash Formulates specificationsndash Integrates them into a programndash Aligns customer (patient) needs with provider services
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Current Best Practice Resources
bull Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)ndash Articlesndash Templatesndash Assessment toolsndash wwwaccc-cancerorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Current Best Practice Resources
bull American College of Surgeons Commission on Cancer Standard Drafts ndash 31 Patient Navigationndash 32 Psychosocial Distress Screeningndash 33 Survivorship Care Planhttpwwwfacsorgcancercoccocprogramstandards2012pdf
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Current Best Practice Resources
bull Published navigation research or literature review articles
bull Professional organizations bull Regional best practicebull Classic best practice
ndash Orlandorsquos 5-step nursing process theory
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Survivor Care Plans as a Best Practice
bull The number of survivors is risingbull The number of medical oncologists is notbull Primary care physicians may be responsible
for cancer surveillancebull Changes in breast cancer treatment occur
often bull Coordination of care is imperative
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Survivor Care Plans
bull What are theyndash Useable documentation of treatment completed and plan
for futurendash Comprehensive record of diagnosis and treatmentndash Patient-friendly and valuable to providersndash Includes treating providers amp contact informationndash Includes treatment identification dose duration effectsndash Includes services used ndash Includes guidance for recovery and survivorshipndash Includes surveillance recommendations health
maintenancendash Lifestyle changes
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
National Community Cancer Centers Program (NCCCP) Survivor Care Plan
bull Four methods of care plan development1 Cancer registry
populates treatment summary
2 Nurse Practitioner led survivorship program using software for care plan
3 Survivorship Navigator completing treatment summary
4 Use online care plans such as
wwwjourneyforwardorgwwwnursingcentercomlibrarystaticasppageid=721731732wwwlivestrongcareplanorg
Survivor care plans will be required for ACoS CoC Accreditation 2015
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Successful Survivorship Program Initiation and Support
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Why Are Survivor Programs Important for Your Navigation Program
bull Increasing number of cancer survivors requiring continuing carendash Better treatmentndash Better follow-upndash Better sciencendash Better deliveryndash Better professional
education
bull New phase in the cancer trajectory Survivorship
bull Longer lifebull Patient demandbull Extension of traditional
treatmentbull Primary care physicians
may not be familiar with late effects of diagnosis or treatment
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
What Survivor Programs Are Right for Your Navigation Program
bull Use the 5-step Nursing Process ndash Assess Find out what is
neededbull Surveybull Focus groupbull Interview patients amp
providersbull Practicality bull Costbull Shareholders
ndash Nursing Diagnosis Define needs in terms of patient barriers
ndash Examplesbull Lack of adherence to
hormonal therapybull Poor appointment
follow-upbull Fear about leaving
active treatmentbull Other
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
What Survivor Programs Are Right for Your Navigation Program
bull Plan Develop an interactive engaging way to educate patients meeting the needs expressedndash Contentndash Adult learning stylesndash Program providers
resourcesndash Fundingndash Scope of practicendash Specific goalsndash Team involvement
bull Implement Time to practicendash Try out your program
ideas with an open mindndash Know that some
components will be successful some will need revision
ndash Build resource list
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
What Survivor Programs Are Right for Your Navigation Program
bull Evaluate Look at your successes and failuresndash Keep a list of what went
well and what didnrsquotndash Develop a way to prove
effectiveness of your program
ndash Readjust your program to enhance effectiveness
bull Process is the key wordndash Programs are never
finished open to changendash Make it fun for you and the
people you servendash Ideas are limited only to
your imagination and creativity
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Prescription for LivingBeyond Breast Cancer
What
bull An 8-session interactive class for women who have been diagnosed and treated for breast cancer
bull Womenrsquos Intervention Nutrition Study Chlebowski (2006)
bull Nutritionbull Physical activity
bull Stress reductionbull Informationbull Taught by oncology
dietitians nurse navigatorbull Guest speakers include
physician navigation team members community leaders
bull In place for 4 yearsbull Adjustments made to
reflect patient need
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Prescription for Living Beyond Breast Cancer
bull Assessndash Focus groupndash Surveyed providers and
patientsndash Secured support for
referral from providersndash Engaged pharmaceutical
reps for fundingndash Applied for grants
bull Nursing diagnosisndash Asked providers what
barriers patients encountered most often after treatment
ndash Distilled that list to teachable vignettes linking them with current research findings and recommendations
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Prescription for Living Beyond Breast Cancer
bull Planndash Reviewed adult learning
preferencesndash Organized topics ndash Requested speaker
commitmentndash Outlined coursendash Compiled supporting
informationndash Developed Power Points
ndash Considered learning experience to include many modalities
ndash Purchased tools amp booksbull Calorie Kingbull ACS Healthy Eating
ndash Contacted related organizations for patient handouts
bull Calcium Supplementsbull Vaginal lubricantbull Lymphedema ID
wristbands
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Prescription for Living Beyond Breast Cancer
bull Implementationndash Offered first class in
September 2007 ndash Two times afternoon and
eveningndash Spring and fall classesndash 90-minutes classndash Provided instruction
demonstration homework and food tasting
ndash Secured funding
bull Evaluationndash Pre- and post-class
evaluation for participants
ndash Evaluations per funding agreement
ndash Feedback from providersndash Feedback from speakers
Reassessment and program change
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Orlandorsquos Nursing Process Theory Is a Valuable Tool in Navigation Programs
bull Effective navigation is the nursing processbull Know it and use itbull The answer to navigation process
development and success has been with us all along
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
For questions or comments sbowman2wellspanorg
717-741-8455
With thanks and appreciation toDavid Bowman - presentation developmentTom Bowman - support and editingYork Cancer Center for supervision
and encouragement
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Breast Cancer NavigationChallenges Facing the
Younger Breast Cancer Patient
Leesa Mattingly RN OCNBreast Health NavigatorNorton Cancer Institute
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Norton Healthcare and The Norton Cancer Institute
bull Norton Healthcare is the largest provider of healthcare in Louisville Kentucky and the surrounding region with 5 acute care hospitals
bull Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky
bull The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research increase access to care and increase quality of care
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Norton Cancer InstituteResource Centers
bull The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer
bull These centers are staffed Monday-Friday 800 AM-430 PM with Oncology Certified
Nursesbull Many of the services are offered at no cost to
anyone in the community with a cancer diagnosis caregiver or family member
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Community Resources
bull Support groupsbull Educationbull Massage therapybull Art therapybull Music therapybull Behavioral oncologybull Nutritional counselingbull Transportation assistancebull Free wigsturbansbull Look GoodhellipFeel Better (LGFB) Programbull Community OutreachScreenings
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Navigation Program
bull 3 Breast Health Navigatorsbull 1 Thoracic Navigatorbull 1 Neuro Navigatorbull 1 GI Cancer Navigatorbull 1 Hepatic Arterial Navigatorbull 4 Oncology Navigators
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
What Is a Nurse Navigator
bull An Oncology Certified Nurse who oversees the educational emotional and social needs of the patients and family members from point of suspicious finding through diagnosis treatment and into survivorship
bull Nurse navigators are specially trained to offer the latest information on prevention early detection of cancer treatment options and recovery concerns
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Norton Cancer Institute Breast Health Services
bull The multidisciplinary team includesndash Board Certified Breast Surgeons ndash Board Certified Reconstructive Surgeonsndash Medical and Radiation Oncologistsndash Genetic Counselorsndash Lymphedema Specialistsndash Oncology Certified Nursesndash Nurse Navigatorsndash Counselorsndash Behavioral Oncologistsndash Licensed Dietitiansndash Social Workersndash Complementary Therapists
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Referrals
bull Physician referralsndash Inpatient and outpatient
bull Surgery schedulebull Community outreachscreeningsbull Reputation in the community
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Facts About Breast Cancer
bull Young women under age 45 can and do develop breast cancer In the United States about 10 of all breast cancer occurs in women under age 45
bull 24000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer)
bull More than 3000 will diebull Breast cancer is the leading cause of cancer deaths in
women under age 40 (wwwkomenadvocacyorg)
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
History of the Young Survivors Support Group
bull In September 2006 a young women (MS) in our community was diagnosed with breast cancer at age 31
bull MS shared her story with the news media and her journey was also followed by our local paper
bull MS focused on ldquowanting to help other young women like myselfrdquo
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
What Makes This Support Group Different
bull Women aged 40 and younger when first diagnosed with breast cancer
bull Activitiessupportndash Lunchdinnerndash Social networkingndash Survivors willing to mentor a newly diagnosed
woman caregiver or spousendash Family eventsndash Young Survivors Coalition Annual Conference
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
How Is It Funded
bull Auctionbull Local football gamebull Donations
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Case Study 1 JH
bull JH was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)
bull Biopsy showed a G3 IDC of the right breast ER-PR+ Her-2neu-
bull She and her mother arrived from the surgeonrsquos office for our first meeting together
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Assessment of BarriersJH
bull Educationbull Financesbull Physician appointmentsbull Chemobull Fertilitybull Body imagebull Autonomybull Anxiety fear stress
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull JH opted for a right mastectomy with left prophylactic
mastectomy and immediate reconstruction with tissue expanders (TEs) Right sentinel node biopsy removed 6 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
MD Appointments
bull Medical Oncologist - Chemotherapyndash Dose-dense doxorubicin and cyclophosphamide times
4 cycles followed by docetaxel times 4 cyclesndash No hormone suppression
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash No egg harvesting
bull Geneticsndash Mother negative for breast cancer maternal grandmother
with breast cancer at age 65ndash Father was adoptedndash Negative for BRCA I and II mutation
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Finances
bull College student living at home with parentsbull Covered by her fatherrsquos insurancebull Leave of absence from schoolbull Parents voiced some financial concerns
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Body Image
bull Bilateral mastectomybull Chemo
Hair losswig LGFB program Weight gaindietitian exercise and yoga
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Autonomy
bull JH is an adult of legal age living with her parents
bull HIPAAbull Building trust
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Emotional Issues
bull Anxiety fear stressndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Friendsfamily
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Case Study 2 AL
bull In February 2009 AL found a lump in her right breast while performing BSE This was 10 days after her 27th birthday and 8 months after her motherrsquos diagnosis with breast cancer
bull Biopsy showed IDC of the right breast ER+PR-Her-2neu-
bull Married with no children Works as a medical assistant in a physicianrsquos office
bull Family history includes grandmother mother (diagnosed at age 61) and several aunts with breast cancer
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Assessment of BarriersAL
bull Educationbull Financebull Chemobull Physician appointmentsbull Fertilitybull Body imagebull Anxiety fear stress guilt anger
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Education
bull Type of cancer grade prognosticsbull Mastectomy bull Prophylactic mastectomybull Reconstructionbull Lumpectomybull Radiationbull Sentinel node biopsybull AL opted for right mastectomy with prophylactic
left mastectomy and immediate reconstruction with TEs Sentinel node biopsy removed 10 nodes all negative
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
MD Appointments
bull Medical Oncologist - Chemotherapyndash Cyclophosphamide and docetaxel times 6 cyclesndash Oral antihormone agent
bull Reconstructive Surgeonndash Immediate reconstruction with TEs
bull Fertility Specialistndash Egg harvesting
bull Geneticsndash Negative for BRCA I and II mutation
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Finances
bull AL had to continue working during treatment Fertility procedure was not covered by insurancendash Med Assistndash Co-Pay Reliefndash ACSndash Fertile Hopendash Transportation Assistance
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Body Image
bull Bilateral mastectomybull Chemo
ndash Hair losswig LGFB programndash Weight gainexercise and yoga
bull Hormone suppressionndash Decreased libidobehavioral oncology
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Emotional Concerns
bull Anxiety fear guilt stress angerndash Young Survivors Support Groupndash Behavioral oncologyndash Massage therapyndash Spousendash Familyfriendsndash Church
bull Delay in pregnancy
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
JH and AL Today
bull JH has completed treatment phase She works part- time and attends college
bull AL has finished her chemotherapy treatment and breast reconstruction She remains on an oral antihormonal medication She is working full-time as a medical assistant in a physicianrsquos office AL is anxious to end treatment totally so that she can pursue her lifelong dream of becoming a mother
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
Quotes from a Young Survivor
bull ldquoI joined the Young Survivors group and looked forward to the fellowship I had other women who made me feel like what I was going through was normal that I wasnrsquot alonerdquo
bull ldquoAs a young woman I feel the dynamics of cancer affect us differently than that of the middle-aged population Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young agerdquo
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
ldquoEGGS FOR EGGSrdquoAlicia
an employee of Internal Medicine and Pediatricshas just been diagnosed with breast cancer
Within 3 weeks she will be undergoing a double mastectomyAs if that wasnrsquot bad enough
Alicia is 27 years oldThe chemotherapy will more than likely make it impossible
For her to ever be a MommyShe was hoping to go through an Egg Harvesting procedure
Before her surgerybut it will cost $12000
These ribbons were created out of lovein hopes that we could help offset the costs
Show your supportand take a ribbon out of one of these special eggsWe ask that you leave behind a pledge of support
Whether itrsquos $1hellipor $100hellip
We thank you for helping ushelp Alicia
To fulfill what she ultimately wantshellipTo Be a Momhellip
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg
References
bull Facts about breast cancer retrieved August 8 2011 from wwwkomenadvocacyorg
bull Norton Healthcare retrieved August 8 2011 from wwwnortonhealthcareorg