1. Survivorship Essentials for Practice Administrators Christina Bach, MBE, MSW, LCSW, OSW-C Carolyn Vachani, MSN, RN, AOCN

2. Before we get started... ● How many of you represent a Commission on Cancer (CoC) accredited practice? ● How many of you represent a practice that is not CoC accredited? ● How many of you have a survivorship clinic affiliated with your practice? ● How many of you have a plan for providing survivorship care or transitioning your oncology patients back to primary care after completion of their cancer treatment?

3. What is A Cancer Survivor? ● A person with cancer is considered a “survivor” from the time of diagnosis. ● Many groups include caregivers, family and friends in the definition as well. ● However, in clinical practice, survivorship care typically begins at the end of active treatment. ● This difference in definitions may leave some behind when it comes to survivorship needs.

4. What Does a Survivor Experience? Society, family and friend’s expectations. Their own expectations.

5. In Reality Feel that their safety net has been taken away. Fear of what is to come and what to expect. When will I feel “normal” again?

8. What Does a Survivor Need? ● Support during the transition to survivor and beyond. ● Education about life after cancer: ● Physical effects. ● Practical concerns: financial, work, insurance. ● Fear and anxiety of recurrence. ● Importance of healthy lifestyle. ● Preventive medicine. ● Plan for follow up care, concerning symptoms to report.

9. What Is Survivorship Care?

10. Common Physical Concerns ● Fatigue ● “Chemo Brain” ● Sexuality & intimacy concerns ● Weight gain or loss ● Neuropathy ● Fertility concerns ● Pain ● Lymphedema ● Risk of osteoporosis ● Menopause symptoms

11. Common Psychosocial Concerns ● Worry, anxiety and depression ● Fear of recurrence ● PTSD ● Relationships / dating ● Changes in physical abilities ● Body image/appearance changes ● Changes in what you thought your future would look like ● Insomnia ● Job or school issues ● Insurance – health & life ● Financial

12. What is a Treatment Summary? ● A document that summarizes the cancer diagnosis & treatments. ● Relevant pathology results ● Surgery ● Medical therapies (chemo, hormone, biotherapy) ● Radiation therapy ● No “right way” to do this!

13. What is a Survivorship Care Plan? ● A survivorship care plan (SCP) is a document that outlines possible health risks, psychosocial effects, financial effects and genetic risk related to cancer and cancer therapy. ● How to reduce health risks, when possible, through healthy lifestyle and preventive therapies. ● How to monitor for late effects with your healthcare team. ● Follow up care & other screening. ● Referrals for follow up care and resources.

14. Why All the Fuss? ● People have been surviving cancer for many years, but in recent years the focus on survivorship has increased. ● Over 15 million survivors in the US today = a VOICE! ● Institute of Medicine Report (2006). ● Commission on Cancer accreditation mandates (2015).

15. Institute of Medicine Report ● Published in 2006 by an expert panel. ● Raises awareness of the medical, functional and psychosocial consequences of cancer & cancer treatment. ● Defines quality health care for survivors & identifies strategies to achieve this. ● Recommends policies to improve survivor’s rights. ● Also discusses most PCP’s discomfort with caring for survivors and the lack of guidance by oncology teams.

16. Institute of Medicine Report ● Report recommends: ● More research initiatives. ● Increase awareness of survivorship issues. ● Increase communication between providers (oncology, other specialists & PCP). ● All survivors (& their PCP) should receive a treatment summary and survivorship care plan. ● Survivors be active participants in their care.

17. Commission On Cancer ● A consortium of 51 oncology professional organizations. ● The CoC accredits over 1500 cancer programs in the US. ● In order to achieve accreditation, programs must meet a set of standards.

18. CoC Definition of Cancer Survivor ● Focuses on a subset of cancer survivors, “eligible patients” who: ● Are being treated with curative intent. ● Have completed active therapy (other than long term hormonal treatment). ● All disease sites that fit these criteria are included as potential “eligible patients.” ● Recommends “eligible patients” receive: ● “A comprehensive care summary and follow up plan that is also clearly and effectively explained to the patient AND caregivers.”

19. CoC Survivorship Mandate Implementation Goals ● 1/1/16- The program will provide survivorship care plans to 25% of eligible patients. ● 1/1/17- The program will provide survivorship care plans to 50% of eligible patients. ● 1/1/18- The program will provide survivorship care plans to 75% of eligible patients. ● 1/1/19-The program will provide survivorship care plans to eligible patients.

20. Other Regulatory Requirements ● NAPBC (National Accreditation Program for Breast Centers) ● TS/SCP in place in < 1yr from tx completion. ● “Process” in place for pts. Stage 0-III. ● QOPI (ASCO Quality Oncology Practice Initiative) ● Focuses on treatment summary after chemotherapy. ● Patient Centered / Oncology Medical Home ● Very few accredited sites. ● Includes survivorship care that mirrors CoC standard.

21. Oncology Care Model ● Demonstration project through CMS. ● Value based payment model for physician practices administering chemotherapy. ● Goal: Provide cancer patients with higher quality, better coordinated care at a lower costs. ● Requires practices to documents a CANCER care plan. ● A survivorship plan is a required component of the cancer care plan. ● Must include recommendations for follow-up and surveillance, risk reduction and health promotion.

22. One Size Does Not Fit All: Models of Survivorship Care Oncology specialist care Multi-disciplinary survivorship care Disease specific survivorship care General survivorship clinic Consultative survivorship clinic Community generalist model (PCP) Shared-care model (oncology/PCP; with/without transition) http://www.asco.org/practice-research/models-long-term-follow-care

23. Challenges to Providing Survivorship Care ● Resources – Tools to provide SCP, EMR integration. ● Personnel – Whose job is it? ● Reimbursement & billing challenges. ● Finding the model for your practice and community. ● What is the PCP’s role in survivorship? ● Is there benefit to SCPs?

24. Resources for Survivorship Information ● National Coalition for Cancer Survivorship: www.canceradvocacy.org ● Office of Cancer Survivorship: dccps.nci.nih.gov/ocs ● ACS / GWU National Cancer Survivorship Resource Center: www.cancer.org/survivorshipcenter www.cancer.org/survivorshipcenter ● Center for the Advancement of Cancer Survivorship, Navigation, and Policy (caSNP): smhs.gwu.edu/gwci/survivorship/casnp ● OncoLink, ACS, CancerCare, LIVESTRONG, cancer.net

25. Discussion and Questions? Thank you! Contact Information: Carolyn Vachani: cvachani@oncolink.orgcvachani@oncolink.org Christina Bach: christina.bach@uphs.upenn.educhristina.bach@uphs.upenn.edu