Overview of Cancer SurvivorshipOverview of Cancer Survivorship

Patricia A. Ganz, M.D.Professor, UCLA Schools of Medicine & Public Health

Director, UCLA-LIVESTRONG SurvivorshipCenter of ExcellenceCenter of Excellence

Jonsson Comprehensive Cancer Center

Who are the Cancer S r i ors?Survivors?

• More than 1 in 3 Americans willMore than 1 in 3 Americans will be diagnosed with cancer in their lifetime et e

• 11.1 million Americans have a personal history of cancerpersonal history of cancer

• The number of cancer survivors ill i h l d i thwill increase sharply during the

next 25 yrs

IOM t f th t t t tIOM report focuses on the post-treatment and pre-recurrence/end-of-life phase of care

American Cancer SocietyAmerican Cancer Society

Public Service Advertisement ca. 1988

Cancer Survivor FactsCancer Survivor Facts60% of survivors are currently over the age 65 % y gyears.Breast, Prostate, and Colorectal, are the 3 mostBreast, Prostate, and Colorectal, are the 3 most prevalent cancer sites.Approximately 14% of the 11 1 million estimatedApproximately 14% of the 11.1 million estimated cancer survivors were diagnosed over 20 years ago.The current average age of male and female cancer survivors is 69 and 64 respectively.

5-Year Survival of Patients with Cancer by Era, SEER, 1975-1998

80 Year of

70

Diagnosis20042004P j t dP j t d

60 1993-98Survival

(%)

ProjectedProjected

50

601987-92

1981 86Peak to Valley

50 1981-861975-80

Transformation

Age at Diagnosis (Years)

400 10 20 30 40 50 60 70

Trends in Five-year Relative Survival (%)* Rates, US, 1975-2003

Site 1975-1977 1984-1986 1996-2003All sites 50 54 66B t (f l ) 75 79 89Breast (female) 75 79 89Colon 51 59 65Leukemia 35 42 50Lung and bronchus 13 13 16Melanoma 82 87 92Non-Hodgkin lymphoma 48 53 64Non Hodgkin lymphoma 48 53 64Ovary 37 40 45Pancreas 2 3 5P 69 6 99Prostate 69 76 99Rectum 49 57 66Urinary bladder 74 78 81

*5-year relative survival rates based on follow up of patients through 2004. Source: Surveillance, Epidemiology, and End Results Program, 1975-2004, Division of Cancer Control andPopulation Sciences, National Cancer Institute, 2007.

Survivors by Cancer Survivors by Cancer Survivors by Cancer Survivors by Cancer Invasive /1st Primary Cases Only Invasive /1st Primary Cases Only

(N = 11.1 million)(N = 11.1 million)( )( )

SEER Nov 2007

How did we make such incredible strides?

E li d t ti• Earlier detection• New drugs and other treatments• Combined modality therapy• Prolonged adjuvant and/or maintenanceProlonged adjuvant and/or maintenance

therapies• High dose chemotherapy with HCT• High dose chemotherapy with HCT• Prevention of second malignancies

But there is a costBut there is a cost…

• TimeTime• Money

H• Human• Interpersonal• Existential

For many individuals cancer is For many individuals, cancer is now a chronic disease…..

• Comparison of cancer survivors and age-• Comparison of cancer survivors and age-matched individuals from the National Health Interview Survey (NHIS) in 2000Health Interview Survey (NHIS) in 2000

• Multiple measures of burden embedded within the surveywithin the survey

JNCI 96:1322, 2004

Health Status is Significantly Poorer i C S iin Cancer Survivors

Excellent Excellent

Cancer Survivors (N=1817) Noncancer Controls (N=5465)

VeryGoodGood

VeryGoodGood

Fair

Poor

Fair

PoorPoor Poor

18% Fair & Poor

Yabroff, JNCI 2004 P <.001

18% Fair & Poor31% Fair & Poor

Number of Comorbid ConditionsBurden of Illness is Greater

60

50

60

30

40

Ca Surv%

10

20Noncancer

0

10

0 1 2 >= 3P<.001

Yabroff et al. JNCI 2004

Cancer Survivors Need More Help with Activities of Daily Living (ADLs)

Cancer Noncancer

Activities of Daily Living (ADLs)

survivorsN=1817

controlsN=5465

Needs help with instrumental ADLs

11.4% 6.5%

P <.001Any limitation in any way

36.2% 23.8%P 001way P <.001

Needs help with ADLs 4.9% 3.0%P=.003

Yabroff et al. JNCI 2004

Cancer Care Trajectory

Cancer-FreeSurvival

T t t With

ManagedChronic or

Recurrence/Second CancerStart Here

Treatment With Intent to Cure

IntermittentDisease

Diagnosis andStaging

Treatment Failure

Survivorship Care

Palliative Treatment

D thDeath

IOM, 2005

IOM Findings:S i hi CSurvivorship Care• Survivorship care is a neglected phase of the cancer care trajectory

• Cancer recurrence, second cancers, and treatment late effectstreatment late effects concern survivors

• Few guidelines on• Few guidelines on follow-up care

• Providers lack• Providers lack education and training

IOM Findings:S i hi CSurvivorship Care

• Survivors may:• Survivors may:

– be unaware of risk

– have no plan forhave no plan for follow-up

• Opportunities to ppintervene may be missed

• Cancer care is often not coordinated

• Models of• Models of survivorship care not tested

IOM Findings:Quality Survivorship Q y pCareCh i• Chronic care model applies

• Essential care components

–Prevention

–SurveillanceSurveillance

–Intervention

Coordination–Coordination

Why is cancer different from other chronic diseases?

• Cancer treatment is….Cancer treatment is….– Complex– Multi-modalMulti-modal– Multi-disciplinary

Toxic– Toxic– Expensive

And often poorly coordinated– And often poorly coordinated• Cancer treatment usually occurs in isolation

from primary health care deliveryfrom primary health care delivery

Other Challenges

• Limited systematic study of the late effects of cancer therapy

• Follow-up care plans have been ad hoc, p p ,with focus on surveillance for recurrence

• When should health promotion andWhen should health promotion and chronic disease prevention become the focus?focus?

• Infertility? “Dear, you should just be happy to be alive ”to be alive.

Why does cancer care present such a challenge?

• An average of 3 specialists/patient, with treatments across time and space…outpatient, inpatient, specialized treatment facilities…. limited communication among treating physicians, multiple medical records

• In addition, aging of the population AND work force shortageg

Proposed Strategies to Address these Challenges

• Integrated, electronic medical recordsIntegrated, electronic medical records• Patient navigators• Consultation planning• Consultation planning

N f th t t iN f th t t i id lid lNone of these strategies areNone of these strategies are widely widely available for patients receiving active available for patients receiving active treatment!treatment!treatment!treatment!

What happens when treatment ends?What happens when treatment ends?

Why do we need a survivorship care plan?

• To summarize and communicate whatTo summarize and communicate what transpired during cancer treatment

• To describe known and potential late effects of pcancer treatments, with expected time course

• To communicate to the survivor and other health care providers what has been done and what needs to be done in the futureT t h lth lif t l t t• To promote a healthy lifestyle to prevent recurrence and reduce the risk of other comorbid conditionscomorbid conditions

Survivorship Care Plan flows from h IOM R d iother IOM Recommendations

• Continuous healing relationshipsg p• Customization based on needs and values• Patient as the source of control• Shared knowledge and free flow of information• Evidence-based decision making

S f t t t• Safety as a system property• Need for transparency• Anticipation of needs• Anticipation of needs• Decrease in waste• Cooperation among physiciansp g p y

Key Elements Included in Survivorship C PlCare Plan

• Specific tissue diagnosis and stage• Specific tissue diagnosis and stage• Initial treatment plan and dates of treatment• Toxicities during treatment• Toxicities during treatment• Expected short- and long-term effects of RX• Late toxicity monitoring neededLate toxicity monitoring needed• Surveillance for recurrence or second cancer• Who will take responsibility for survivorship careWho will take responsibility for survivorship care• Psychosocial and vocational needs• Recommended preventive behaviors/interventionsRecommended preventive behaviors/interventions

Where does the Survivorship Care Plan fitin the Chronic Care Model?

Epping-Jordan, J E et al. Qual Saf Health Care 2004;13:299-305

Survivorship Care PlanSurvivorship Care Plan

Copyright ©2004 BMJ Publishing Group Ltd.

What are the barriers to routine generation of a treatment summary andgeneration of a treatment summary and

survivorship care plan?

• An expectation in some specialties and not others (e.g. radiation therapy vs. medical ( g pyoncology)

• Lack of appreciation of the need and value added

• Lack of time/reimbursement• Lack of awareness that survivors and primary

care physicians need improved communicationcommunication

Oncology Community’s Response to h IOM Rthe IOM Report

• American Society of Clinical Oncology (ASCO)American Society of Clinical Oncology (ASCO) has developed templates for patients finishing adjuvant therapy for breast and colon cancer

• Generic template and lung cancer templates also available

• ASCO has worked with electronic health record vendors to extract treatment plan and treatment

di l f h l i dsummary directly from the electronic record• See www.asco.org/treatmentsummary

Colon Cancer Adjuvant Therapy Treatment Plan & Summary

The Treatment Plan and Summary provide a brief record of major aspects of colon cancer adjuvant chemotherapy. This is not a complete patient history or comprehensive record of intended therapies.

Provider name:

Patient name: Patient ID:

A tPatient DOB: (___/___/___) Age at diagnosis: Patient phone:

Support contact name:

Support contact relationship: Support contact phone:

Background Informationg

Cancer detection: □ Screening □ Symptoms □ Incidental

Site in colon: □ Right □ Transverse □ Left □ Sigmoid

Predisposing conditions: □ None □ Inflammatory bowel disease □ FAP □ HNPCC

Family history: □ None □ 2nd degree relative □ 1st degree relative □ Multiple relativesy y g g p

Pre-op colonoscopy to cecum: □Yes □ No Other lesions: □ None □ Low risk polyps □ High risk polyps

Primary colon operation: Date of surgery: (___/___/___)

Surgery type: □ Elective □Emergent CEA pre-op: CEA post-op:op:

Stage: □ IIA □ IIB □ IIIA □ IIIB □ IIIC T stage: □T1 □ T2 □ T3 □ T4

N stage: □ N0 □ N1 □ N2

Number of lymph nodes removed: Number of lymph nodes positive:

Notable pathology findings:

White sections to be completed prior to chemotherapy administration, shaded sections following chemotherapy

Height: in/cm Pre-treatment weight: lb/kg Post-treatment weight: lb/kg

Pre-treatment BSA:

Name of regimen:

Treatment on clinical trial: □ Yes □ No

Start Date: (___/___/____) End Date: (___/___/____)

Bio/Chemotherapy Drug Name Route Dose Schedule Dose reduction

neededNumber of cycles

administered

□ Yes_____% □ No

□ Yes_____% □ No

□ Yes % □ No□ Yes_____% □ No

□ Yes_____% □ No

Possible side effects of this regimen:H i l

Number of cycles containing oxaliplatin:□ Hair loss □ Neuropathy □ Low blood count □ Fatigue □ Diarrhea □ Dehydration

N /V iti

Serious toxicities during treatment (list all):

Hospitalization for toxicity during treatment: □ Yes □ No

Reason for stopping adjuvant treatment:

Disease status at end of treatment: □ No evidence of disease□ Nausea/Vomiting□ Other:

Disease status at end of treatment: □ No evidence of disease□ Possible recurrence □ Recurrence

Current status:I l i d E l iImplementation and Evaluation

• In 2008, ASCO introduced treatmentIn 2008, ASCO introduced treatment summary & care plan as a quality improvement measure p

• Increasing visibility of cancer survivorship and survivorship programs using some p p g gform of treatment summary

• LIVESTRONG Survivorship Centers of pExcellence

• Other efforts – www.journeyforward.orgj y g

When does long-term survivorship begin?• Definitional problems should it begin• Definitional problems…should it begin

at the moment of diagnosis when treatment decisions are being made?treatment decisions are being made?

• The eye is in the beholder…for some ti t d id it i lpatients and providers, it is only many

years later, or after some of the late ff t teffects are apparent

• Problem of labeling

Survivorship Health Care DeliverySurvivorship Health Care Delivery

• Ganz’s Three P’s of Survivor Care• Ganz s Three P s of Survivor Care–Palliation–Prevention

Health Promotion–Health Promotion

Symptom Management/Palliative Care:A I t l P t f S i hi CAn Integral Part of Survivorship Care

• Definition of Palliative Care:Definition of Palliative Care: – Medical care or treatment that concentrates

on reducing the severity of disease symptoms g y y p(particularly if there is not a curative medical treatment)

– Goal is to prevent and relieve suffering and to improve QOL for people facing complex illillness

• Focus on the most severe and prolonged tsymptoms

Common Palliative Care Concerns• Pain

F ti• Fatigue• Depression

Ph i l li it ti• Physical limitations• Cognitive changes

L h d• Lymphedema• Sexual dysfunction• Menopause related symptoms• Body Image

Consultant Specialists Required

• Mental healthMental health• Pain management• Physical medicine/vocational rehab• Physical medicine/vocational rehab• Endocrinology

C di l• Cardiology• Gynecology/fertility• Pulmonary• Neurology/neuropsychology

PreventionPrevention

• Systematic ongoing follow-up required forSystematic ongoing follow up required for screening

Goal: early detection and early intervention for– Goal: early detection and early intervention for potentially serious late-onset complications e.g., cataracts, osteoporosis, cardiac diseaseg , , p ,

– Chemoprevention when available– Life style modification to prevent secondLife style modification to prevent second

cancers

Health PromotionHealth Promotion

• Health promotion counselingHealth promotion counseling – Goal: promote risk reduction for health

problems that commonly present during adulthood ( esp. for childhood cancer survivors)Avoid weight gain– Avoid weight gain

– Increase physical activityAvoidance of exposures that are harmful– Avoidance of exposures that are harmful

– Decrease risk of other chronic diseases, e.g. diabetes, heart diseasediabetes, heart disease

Cancer Care Trajectory

Cancer-FreeSurvival

T t t With M di l O t

Recurrence/Second CancerStart Here

Treatment With Intent to Cure

Medical Outcomesand Quality of Life

Diagnosis andStaging

Safer therapies Survivor health care delivery: Palliation Prevention

Risk assessment and intervention at diagnosis

Palliation, Prevention and Health Promotion

Opportunitiespp• At the minimum, we must prepare a

treatment summary on every patienttreatment summary on every patient completing curative-intent therapy…

• Focus on primary secondary and tertiary• Focus on primary, secondary and tertiary prevention of long-term and late effects

• Use treatment summary & care plan to• Use treatment summary & care plan to facilitate sharing and coordination of care

Outcomes & MetricsOutcomes & Metrics

• Adherence to cancer surveillanceAdherence to cancer surveillance• Adherence to cancer therapies (e.g.

adjuvant endocrine therapy)adjuvant endocrine therapy)• Other health maintenance and promotion,

e.g. smoking cessation, weight control,e.g. smoking cessation, weight control, physical activity, immunizations

• Management of psychosocial distress,Management of psychosocial distress, depression

• Prevention of second cancersPrevention of second cancers

ResourcesIOM: Lost in Transition report from 2005IOM: Implementing the Survivorship CareIOM: Implementing the Survivorship Care Planning, Workshop Report, 2006JCO Special Review Issue: CancerJCO Special Review Issue: Cancer Survivorship, November 10, 2006M. Feuerstein (ed.) Handbook of CancerM. Feuerstein (ed.) Handbook of Cancer Survivorship, Springer, 2007P. Ganz (ed.) Cancer Survivorship: TodayP. Ganz (ed.) Cancer Survivorship: Today and Tomorrow, Springer, 2007

VITA stands for....“Vital Information and Tailored Assessment”Vital Information and Tailored Assessment

The VITA Program is the clinical arm ofThe VITA Program is the clinical arm ofUCLA-LIVESTRONG Survivorship COE

http://vita.mednet.ucla.edu/

What is needed to implementWhat is needed to implement the survivorship care plan?

Acceptance of cancer as a chronic disease—following an initial period of extraordinarily complex therapy!therapy!Reimbursement for evaluation and management time required to prepare and communicate the planExpand the evidence-base of knowledge re: late effects, follow-up needs and survivorship careTrain all health professionals in the needs of theTrain all health professionals in the needs of the growing number of cancer survivors—how to act on the care plan recommendations

Cancer Survivorship Care Plans:pA model for integration of QOL & QOC

Quality of Life Quality of Care