1. Mary S. McCabe Survivorship Care Planning

2. National Directions Focus on recurrence Increasing expectations by patients and families Identification of late effects Development of evidence based/consensus guidelines Focus on evaluation › Process › Outcomes

3. Genetic Factors Comorbidities Lifestyle Behaviors Exposures Surgery Chemotherapy Radiation Long Term and Late Effects Cancer Survivors Risk of Health Outcomes

4. Focus › Surveillance for recurrence of the primary cancer › Monitoring and managing medical and psychosocial late effects › Providing screening recommendations for second cancers › Health education about survivorship issues and availability of community resources › Health promotion, including smoking cessation, diet and exercise › Review of treatment summary and care plan › Communication with community physician › Empowering survivors to advocate for their own health care needs Elements of Survivorship Care

5. Conceptual Framework for Survivorship Care Planning Parry, et al, JCO, 31 (21), July 20, 2013, pg. 2651 - 2653

6. Models of Survivorship Care Delivery Oncologist Specialist Care Multi-disciplinary Clinic Disease/treatment Specific Clinic General Clinic Consultative Clinic Integrated Clinic Community Generalist Clinic Shared-Care of Survivor

7. Community Model of Care Coordination of Services Coordination among: › Oncologists › Hospitals › Primary Care Complementary roles: › Cancer focused surveillance › General medical care › Patient education and support › Care plans

8. Models of Care AuthorComparisonPopulationQOLPT Satisfaction Psych Function Recurrence Complication s Kimman 2010Nurse Oncologist BreastNo reportNo differenceNo report Grunfeld 2006 PCP Oncologist BreastNo differenceNo report No difference Wattchow 2006 PCP Surgeon ColonNo difference Koinberg 2004 Nurse Oncologist BreastNo difference (HADS) No difference Moore 2002 Nurse Oncologist LungNo differenceHigher for nurses ↑ nursesNo difference Baildam 2002Nurse Oncologist BreastNo reportHigher for nurses ↓ distress nurses No difference Brown 2002 Conventional On-demand BreastNo difference (HADS) No difference Helgeson 2000 Nurse Oncologist ProstateNo reportNo difference Guillford 1997 More/Less Follow-up BreastNo reportPreferred less follow-up No reportNo ↑ Services/cost Grunfeld 1996 PCP Oncologist BreastNo differencePrimary careNo Difference anxiety No difference

9. Clinic/service structure and type of provider depend on: » Type of services to be provided Medical Psychological Social Rehabilitation Financial » Timing of the services Transition visit at the end of therapy Specified time after completion of treatment Ongoing care Providers of Care

10. Follow Up Care of Cancer Survivors DiagnosisTreatment Early Follow Up (FU) Survivorship Post-Tx FU Long Term Post-Tx FU SHARED CARE Oncologist Community Physician MSK Nurse Practitioner CA Recurrence Screening other cancers Sequelae of treatment

11. McCabe, Seminars in Oncology 2013

12. Continuum of Care DiagnosisTreatment Early Follow up Survivorship Post Treatment Follow-up Long-term Post Treatment Follow-up Community Physician MSK Cancer Specialist (surgery, chemotherapy, radiation) MSK Survivorship Nurse Practitioner Community Physician Recurrence

15. Treatment Summary and Care Plans: Survivor Responses (253) Form YesNoUnsure Overall Keep185 (89%)913 Discuss109 (53%)4055 Clear & easy to understand195 (93%)213 Screening Understood information158 (93%)775 Plan to follow recommendation 160 (94%)773 Health Maintenance Understood information186 (74%)597 Plan to follow recommendation 176 (72%)5710 Amount of Information Just RightMoreLess 166 (67%)2162

16. Treatment Summary and Care Plans: Primary Care Responses (86) YesNoUnsure Clearly explained screening, health behavior follow-up 82 (95%)--2 New information60 (70%)149 Comprehensive84 (98%)00 Keep in chart85 (99%)00 Discuss with patient76 (88%)45 Change plans28 (33%)3918 Help co-manage care78 (91%)52 Continue updates83 (97%)01

17. Follow-up Care Guidelines ServiceCancer type IntervalVisitTestingStage/Primary Provider Thoracic LungYear 1Every 3- 6 months CT scan w/contrastSurgeon Year 2Every 6 monthsCT scan w/contrastNurse Practitioner ≥ Year 3AnnualCT scan w/out contrast Urology ProstateYear 1-2Every 6 monthsPSA Every 6 monthsYear 1- Surgeon ≥ Year 1- Nurse Practitioner Year 3 -5AnnualPSA Every 6 months > Year 5AnnualPSA Annual Breast Breast surgery, medicine & rad onc Year 1-2 Every 6-12 months Clinical breast exam, Annual mammogramPhysician >Year 2Every 6-12 months Clinical breast exam, Annual mammogramPhysician or Nurse Practitioner Colo- rectal ColonYear 1-2Every 3-6 months CEA/scope depending on tumor site and CT scan depending on stage Year 1- Surgeon > Year 1- Nurse Practitioner Year 3-5Every 6 monthsCEA/scope depending on tumor site and CT scan depending on stage Nurse Practitioner Year >5AnnualScopeNurse Practitioner RectalYear 1-2Every 3-6 months CEA/scopeSurgeon Year 3- 5Every 6 monthsCEA/scopeYear 3- Surgeon >Year 3- Nurse Practitioner Year >5AnnualScopeNurse Practitioner

18. Quality Guidelines and Metrics for Survivorship

20. American Cancer Society Prostate Cancer Survivorship Care Guidelines bit.ly/ACSPrCa 20

21. Growth of Adult Survivorship Clinics (Visits)

22. Percent Physician Participation (78)85-100% Patient Referral40-94% Patient Acceptance95-98% Adult Survivorship Clinics Participatio n

23. Transition to Primary Care Summary BREAST 2011-2013 LYMPHOMA 2011-2013 PROSTATE 2007-2013 N%N%N% Eligible for transition 3065663-- Offered transition 220472%50576%998 Transitioned to outside PCP 105048%28156%79780%

24. The Future of Survivorship Care Implement and evaluate models of care across diverse health care settings › Optimize communication between providers Care plans Patient portals › Apply a risk-based approach to care Provide services to diverse survivor populations › Race/ethnicity › Education Disseminate established practice standards Move to a rehabilitation concept of care › Integrate survivorship with health promotion and disease prevention strategies

25. Metrics How Are We Doing? Process measures Assess the activities carried out by health care professionals to deliver services Often guided by evidence-based clinical guidelines – Compliance with screening for anxiety and depression – Compliance with pain assessment and palliative care referral when appropriate Outcome measures Change in the health of an individual, group of people or population which is attributable to an intervention or series of interventions – Number of patients successfully treated for anxiety and depression – Number of survivors who are pain free after consult with palliative care

26. Metrics How Are We Doing? Evaluate at System Level – Communication Treatment Summary and Care Plans – Provision to survivors and primary care providers – Practice patterns Consistency across oncology providers – Efficiency Resource utilization, time and cost – Value Quality and cost

27. Actions Needed Increase policy makers awareness of survivorship as a growing public health issue Increased support for research Expand educational opportunities for providers and survivors › Cancer survivors › Medical and nursing trainees › Generalist providers › Oncology providers

28. We’re In This Together