Meeting the Cancer Survivorship Needs of

Colorectal Cancer Patients:Wellness Beyond Cancer

Program

Robin Morash RN, MHS The Ottawa Hospital Cancer Program

Northeast Cancer CentreRegional Oncology Conference, 2013

Painting by P. Kenny – Cancer Survivor

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Conflict of Interest Disclosure

• None to disclose

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Presentation Objectives1. To describe the scope of our

evidence-based survivorship program at The Ottawa Hospital – objectives, key components, knowledge translation initiatives and evaluation framework.

2. To identify program outcomes to date

3. To share early lessons learned in creating a new model of well follow-up cancer care.

Cancer Survivorship

Prevention

Recovery

Palliative & end-of-life care

TreatmentDiagnosisScreening

Definitions of Cancer Survivors From Cancer Patient to Cancer Survivor: Lost in Transition (IOM & NRC 2006):

Following diagnosis and treatment and prior to the development of a recurrence of cancer or death.

National Coalition for Cancer Survivorship (NCCS 2007):

From the time of diagnosis and for the balance of life. NCCS has expanded its definition of survivor to include family, friends, and caregivers.

Lance Armstrong Foundation (LAF 2007):

From the time you find out you have cancer, through your treatment and for the rest of your life.

Centre for Disease Control and Prevention and LAF’s National Action Plan (CDC 2004):

The person diagnosed with cancer, as well as family members, friends and caregivers

National Cancer Institute (NCI 2008):

An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition.

People Living with Cancer (2007):

The process of living with, through, and beyond cancer. By this definition, cancer survivorship begins at diagnosis.

Definitions Commonly Used in Practice

1. Diagnosis to end-of-life

2. Post-treatment to recurrence

3. Specific number of years after treatment

Reference: Environmental Scan of Cancer Survivorship in Canada: Conceptualization, Practice and Research, CPAC, 2008

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Why change our model of follow-up care beyond cancer treatment?

• Current model is not sustainable • Opportunity to:

– improve access to quality cancer care across the care continuum

– better meet the needs of cancer survivors– provide care closer to home– transition into wellness

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What are the essential components of survivorship (follow-up) care?

• Prevention of recurrent and new cancers and other late effects

• Surveillance for cancer spread, recurrence, or second cancers; assessment of medical and psychosocial late effects

• Intervention for consequences of cancer and its treatment

• Coordination between specialist and primary care providers to ensure that all of the survivor’s health needs are met

Canadian Partnership Against Cancer-Pan Canadian Guidance on Psychosocial and Supportive Care Services and Clinical Practices for Adult Cancer Survivors (2010)

IoM – From Cancer patient to Cancer Survivor – Lost in Transition (2006)

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Wellness Beyond Cancer Program

Objectives• Provide survivors and their health care providers

with a care summary & follow-up plan• Empower patients to participate in the

management of their care & well-being• Improve knowledge of health care providers

regarding survivor needs, assessment & management strategies

• Improve cancer system efficiency, & enhance transition & co-ordination of care for cancer survivors

PurposeEnsure that all people, at the end of their active cancer treatment, have access to appropriate follow-up care & the resources required to best meet individual needs.

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Timelines

• Retreat – May 2010• CCO call for proposals – aligned with TOH program objectives• WBCP team created• Support from larger CRC community

– MCC, Regional CoP, PFAC• Education –internal, external partners• Education –PCPs – regional sessions, GP yearly educational

day • CRC implementation – March 2012• Evaluation underway

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Wellness Beyond Cancer Program

• 3 follow-up scenarios based on risk and complexity while fostering appropriate use of health providers;

• formalized partnerships with a community health centre, Maplesoft Center, an evidence-based integrative cancer centre and the Canadian Cancer Society;

• a post treatment needs assessment to identify individual patient needs;

• a wellness (survivorship) care plan supplemented with information about survivorship needs and available resources;

• a discharge letter and accompanying care plan for patients and community-based family physicians and nurse practitioners;

• group sessions for patients and families post-treatment to promote self care and empowerment;

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Wellness Beyond Cancer Program

• an exit appointment with oncologist and one on one counselling with a nurse as required;

• a consultation service for family physicians/nurse practitioners of discharged patients including a rapid re-entry process;

• assessment of adherence to recommended surveillance and late and long term effects;

• a health professional educational strategy;

• an aligned evaluation framework and plan for an evolving research agenda.

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Discharge Criteria: Cancer Program to Wellness Beyond Cancer Program

Patients who have completed adjuvant treatment:

Primary Care Provider Streamo Early stage diseaseo No acute outstanding sequelae or side effects of treatmento No outstanding issues or concerns

NP Streamo Persistent and/ or unresolved acute effects of treatment

and/or; o Requiring continued follow-up and care at the centre

Medical Specialisto Outstanding acute issues requiring medical managemento Patients on clinical trials

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Patient Resources

• Program overview booklet

• Late and long term effects education booklet

• Education sessions

• Wellness care plan

• Web site

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WBCP Education Classes

• Generic Survivorship Class• Disease Site Specific

– Colorectal– Breast– Endometrial

• Future Direction– Videoconferencing– Group Discharge visits

• Demographics

• Disease Summary

• Cancer Team

• Treatment Summary

• Recommended follow-up

• Summary of patient’s self identified needs

Follow-up Care for Survivors of CRC

Test Timeline

Medical History, Physical Exam, and CEA laboratory test

Every 6 months for 5 years

Colonoscopy One year after surgery Frequency of future colonoscopies based on findings of

previous one, but in general to be done every five years. If complete colonoscopy was not done at diagnosis, one

should be done within six months of completing primary treatment.

Abdominal CT Scan Once a year for 3 years*

Chest CT Scan Once a year for 3 years*

Pelvic CT Scan (For rectal cancer only)

Once a year for 3 years*

Additional Comments

* If local resources and/or patient preferences preclude the use of CT: - An ultrasound can be substituted for CT abdomen or pelvis, and - Chest x-ray can be substituted for CT chest. These should be done every 6 to 12 months for 3 years then annually for 2 years (years 4 & 5).

Follow-up Care, Surveillance Protocol, and Secondary Prevention Measures for Survivors of Colorectal Cancer. Cancer Care Ontario; 26-2 EBS: February 2012

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Colorectal WBCP ReferralsThe First Year (March 2012 – March 2013)

PCP NP Onc Total

251 (77%)

66(20%)

7(2%)

324

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• Patient satisfaction• Patient needs and empowerment• Wellness care plan usage by patient and primary care provider• Discharges from cancer program (by physician)• Wait time from referral to consult• Follow up stream usage: family physician, nurse practitioner vs oncologist• Adherence to recommended follow-up tests/care• Incidence of late and long term effects• Use of psychosocial and regional resources• Health provider satisfaction (cancer program and primary care)• Health provider knowledge (cancer program and primary care)• Re-entry to cancer program

Evaluation Elements

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Patient Experience Results

Needs Assessment: Top Ten

– Tingling/numbness– Fear of recurrence– Bowel/bladder– Sleep disturbance– Fatigue– Weight changes– Body changes– Balance and mobility– Sexual issues– Managing emotions

Empowerment

– Capable of handling my illness– Family are supportive– Capable of helping reach

decision about my care– Can adapt to changes in lifestyle– Health professionals include me

in decision making– I still feel useful in my daily life– Friends are supportive– I have all the information I need

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Education ClassesBetter idea of how care coordinated

– Satisfied to Very Satisfied: 94%

Importance of follow-up testing – Satisfied to Very Satisfied: 100%

Better understand resources available– Satisfied to Very Satisfied: 100%

Management of Late and Long Term effects – Satisfied to Very Satisfied: 96%

What our patients said:• “Well presented & very informative”• “A class act”• “I learned a lot”

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Health Care Provider Feedback

“The WBCP has already demonstrated benefit to our patients by reassuring them that the Cancer Centre has a plan for follow-up and other survivorship issues, and will be educating both the patient and Primary Care Provider on these goals”

- Dr. Tim Asmis, GI Medical Oncologist, TOHCP

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Lessons Learned

Consider incentives

• Confidence in follow-up care• Appropriate use of expertise and skills oncologists focus on new

consults and patients on active treatment• Timing – wait time strategies• Access to evaluation data such as incidence of late and long term effects• Introduction of new clinical role – NP• Regional partnership enhancement –key stakeholder engagement• Research opportunities

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Lessons LearnedRecognize disincentives/barriers• Inadequate funding models • Sustainability• Lack of confidence in other care providers• Piloted a new process mapping tool • Oncologists desire to see patients doing well; balance of well patients

and those requiring more intensive care• Patient reluctance to be discharged based on culture of long term

follow-up in cancer program• Lack of regional integrated electronic patient record

Keep the momentum!• Build sustainability into your plan!

– Explore funding opportunities– Engage interested opinion leaders actively into the process

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Key References

Howell D, Hack T, Oliver TK, Chulak T, Mayo S, Aubin M, Chasen M, Earle C, Friedman A, Green E, Jones G, Jones JM, Parkinson M, Payeur N, Sinclair S,Sabiston CM, Tompson M. (2010). Pan-Canadian Guidance on Psychosocial andSupportive Care Services and Clinical Practices for Adult Cancer Survivors,Toronto: Canadian Partnership Against Cancer (Cancer Journey Advisory Group)and the Canadian Association of Psychosocial Oncology, Dec 2010.

Environmental Scan of Cancer Survivorship in Canada: Conceptualization, Practice and Research (2008). BC Cancer Agency for the Canadian Partnership Against Cancer http://www.bccancer.bc.ca/RES/ResearchPrograms/SBR/News/Environmental+Scan.htm

Canadian Invitational Cancer Survivorship Workshop: Creating an Agenda for Cancer Survivorship (2008). Canadian Partnership Against Cancerhttp://www.partnershipagainstcancer.ca./sites/default/files/journey/CPAC_CJ_Survivorship_0308_Final_E.pdf

From Cancer Patient to Cancer Survivor: Lost in Transition (2005). Institute of Medicine and National Research Council of the National Academyhttp://www.iom.edu/Reports/2005/From-Cancer-Patient-to-Cancer-Survivor-Lost-in-Transition.aspx

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Thank you!