1. Deborah K. Mayer, PhD, RN, AOCN, FAAN Professor, University of North Carolina School of Nursing Director of Cancer Survivorship, UNC Lineberger Comprehensive Cancer Center Chapel Hill, NC When Life Is Sewn Back Together, It Has Changed The Challenges of Delivering Coordinated Survivorship Care

2. Survivorship Over Time 1950 5-yr survival = 30% 1975 5-yr survival = 48% 19861996 2005 2007 2010 5-yr survival = 68% “Victims”“Survivors” “War”“Competition”“Journey”

3. Who is a cancer survivor?

4. Survivorship Defined Living cancer free –For remainder of life –Experiences > 1 treatment complication –But dying after a late recurrence –But develops another cancer Living with cancer –Intermittent periods of active disease on/off treatment –Continuously without disease free period 4

5. Taplin, Natl Cancer Inst Monogr (2010) 2010 (40): 3-10. Coordination between specialists and primary care providers to ensure that all of the survivors health needs are met.

6. Do I have cancer? Will I die? How long do I have? What treatment is there? How much will this cost? Does my insurance cover it? What do all these tests mean? Will I be in pain? Will I lose my hair? Can I keep working? What will this mean for my family? What are the side effects? What don’t I know?

7. Who is on your health care team? You Your family and friends Your primary care provider Your cancer doctors, nurses, pharmacist, navigators Any other providers that you may need Any other resources/programs that can help

8. http://www.nejm.org/doi/full/10.1056/NEJMp1406033 Ambulatory Care Coordination for One Patient. Over an 80-day period: 12 clinicians were involved in the care of the patient; Primary care physician (PCP) communicated with the other clinicians 40 times (32 e-mails and 8 phone calls) and with the patient (or his wife) 12 times; Patient underwent 5 procedures and had 11 office visits (none of them with his PCP). Press MJ. (2014) Instant replay--a quarterback's view of care coordination. N Engl J Med.;371(6):489-91

9. Barriers to Survivorship Care Fragmented Delivery System –Hampers coordinated care –Little HCP education/training on topic –Little evidence-based standards of care/guidelines –EHR documentation/sharing/tracking –Capacity and sites of care –Reimbursement issues Communication –HCP to HCP –HCP and Survivor Research –More research on long term and late effects –Evaluate models of care –Conduct more longitudinal studies of adults 9

10. How can we facilitate coordinated care? SurvivorPCPOncologist 10 Enhance communication Increase surveillance Identify and manage long term/late effects Encourage health monitoring and promotion Hewitt et al., 2006; Ganz & Hahn, 2009; Earle, 2006; Jacobs et al., 2009; Salz et al, 2012. SCP Treatment Plan

11. Bookends to Facilitate Cancer Care Treatment Plan –Diagnosis –Treatment Survivorship Care Plan –Surveillance –Long term/late effects –Health promotion http://www.asco.org/practice-research/asco-cancer-survivorship-compendium

12. SEARCHING: T HE A NSWER IS O UT T HERE Cancer Survivors Unmet Needs

13. What have we learned about survivors? 1.There are many unmet needs beyond cancer treatment 2.Many are related to information and emotional needs 3.Few survivors have no problems 4.Few long term longitudinal studies of adults available a.Beckjord (2008) J Cancer Surviv b.Burg (2015) Cancer c.Geller (2014) J Fam Prac 13

15. American Society Clinical Oncology

16. http://www.canceradvocacy.org/wp-content/uploads/2013/01/Teamwork.pdf

18. American Cancer Society

19. SCP Resources ASCO Cancer Survivorship Compendium –http://www.asco.org/practice-research/asco- cancer-survivorship-compendiumhttp://www.asco.org/practice-research/asco- cancer-survivorship-compendium Journey Forward (can create your own) –http://www.journeyforward.org/http://www.journeyforward.org/ LiveSTRONG Care Plan (Can create your own) –http://www.livestrongcareplan.org/http://www.livestrongcareplan.org/ Electronic Health Record vendors Apps

20. Taplin, Natl Cancer Inst Monogr (2010) 2010 (40): 3-10.

21. NCCS adaption of Press, NEJM

22. Many transitions throughout cancer care require written plans- move upstream and repeat as needed across continuum SCP alone may be inadequate to meet the survivorship needs of patients and PCP Careful attention is needed for consistent implementation however one size will not fit all Cancer care  focusing on recovery, health and well-being. Clinical  supported self-management Final Thoughts

23. Do I have cancer? Will I die? How long do I have? What treatment is there? How much will this cost? Does my insurance cover it? What do all these tests mean? Will I be in pain? Will I lose my hair? Can I keep working? What will this mean for my family? What are the side effects? What don’t I know?