1. Survivorship Care Planning

2. Objectives The learner will be able to: 1.Discuss the importance of survivorship in cancer care. 2.Verbalize the steps to develop an effective survivorship care plan.

3. Problem Millions of Americans are cancer survivors who are living with and beyond a cancer diagnosis. About two-thirds of people with cancer are expected to live at least five years after diagnosis.

4. “The transition from active treatment to post-treatment care is critical to long-term health. If care is not planned and coordinated, cancer survivors are left without knowledge of their heightened risks and a follow-up plan of action.” (http://iom.edu/Reports/2005/From-Cancer-Patient-to-Cancer-Survivor-Lost-in-Transition.aspx)

5. IOM Report: Key Recommendations All cancer stakeholders should work to raise awareness of cancer survivorship and to establish this as a distinct phase of cancer treatment. Each patient should be given a Survivorship Care Plan reimbursed by insurers. Plan components should be developed and refined using evidence-based clinical practice guidelines and assessment tools.

6. Survivors’ Needs Survivors feel they need more because they: – Feel abandoned – Have distinct needs – Are living longer and are more numerous – Have more health issues – Need more documentation of their treatment – Want their primary care physicians to be informed.

7. Who Is a Survivor? When Do You Become a Survivor? A cancer survivor is anyone with a history of cancer. Survivorship begins at the time of diagnosis and continues for the remainder of life.

8. National Standards for Survivorship Care Plans QOPI – Initiatives Survivorship Quality Indicators in audit regarding survivorship: Chemotherapy treatment summary provided to patient within three months of chemotherapy end Chemotherapy treatment summary provided or communicated to practitioner(s) within three months of chemotherapy end Chemotherapy treatment summary process completed within three months of chemotherapy end

9. National Standards for Survivorship Care Plans Survivorship Care Plan is given to each patient with cancer upon completion of treatment. Survivorship Care Plan contains a record of care received, important disease characteristics, and a written follow-up care plan incorporating available and recognized evidence-based standards.

10. Survivorship Visit Components Prevention and Wellness Promotion Current Assessment Assessment of physical, social, psychosocial, and spiritual needs Provide treatment summary & survivorship plan Surveillance Interdisciplinary coordination between PCPs, specialists, and support services Referrals Outcome: Individualized survivorship care plan that is provided to patient and primary care provider Identifying a teachable moment Formulating an action plan to address risky lifestyle/habits

11. Treatment Plan vs. Treatment Summary Treatment Plan Recommended prior to starting a treatment Written document outlining treatment plan, side effects, and length of treatment Treatment Summary Cancer type and stage Treatment details: Complications Education on long-term effects Screening recommendations Follow-up recommendations 11

12. Livestrong Treatment Summary

14. Models of Survivorship Care Integrative: Care plan is given during a medical oncology visit by existing team. Stand alone/consultative: Separate visit with a separate team performing a survivorship visit in a clinic; may include one-time visit or multiple visits Transition of patient to a pooled survivorship clinic after completion of treatment; multidisciplinary; usually disease specific Transition to primary care after completion of treatment or at five years

15. Best Practices Academic – Livestrong Centers of Excellence Community – NCCCP (National Comprehensive Cancer Control Program) – ACCC (Association of Community Centers)

16. Livestrong Survivorship Center of Excellence (COE) Network The Livestrong Survivorship COE Network is a collaborative effort of cancer centers at leading medical institutions and community affiliates. – Provide essential direct survivorship services. – Increase the effectiveness of survivorship care through research. – The development of new interventions – Sharing of best practices

17. 30 NCCCP Hospitals 53, 000 new cancer cases 23 million population in 22 states 30 NCCCP Hospitals 53, 000 new cancer cases 23 million population in 22 states

18. NCCCP: Studying Ways To…. NCCCP Disparities 40% of Funding Clinical Trials EHR and caBIG (IT) BiospecimensSurvivorship and Palliative Care Quality of Care Advocacy Cancer Continuum PreventionScreeningTreatmentPalliative CareFollow-upSurvivor SupportEnd-of-life Care Enhance Access Improve Quality of Care Expand Research

19. A Survivorship Visit Survivorshi p visit 1-3 months after acute treatment Referral Intake form sent to patient to complete Abstract medical history Preparation Survivorship Nurse Navigator Survivorship MD/NP Clinic Visit Patient - paper & electronic PCP Reports

20. When Are Patients Seen in the Survivorship Clinic Model? Usual Care Month 0-1: Initial Diagnosis Month 1-7: Treatment: Chemo Month 7-9: Radiation (if needed) Month 11: Office Visit Medical Oncologist Month 14: Office Visit Medical Oncologist Survivorship Clinic Timing Initial Visit 4-8 weeks after chemo & radiotx Approx @ month 7 - 9 Follow-up visit/phone calls based on needs/goals set at initial survivorship visit

21. Survivorship Visit Components Prevention & Wellness Promotion Current Assessment Assessment of physical, social, psychosocial, and spiritual needs. Provide treatment summary and survivorship plan. Follow-up screening schedule for recurrence if any. Secondary malignancy screening. Long-term toxicities from treatment. Roadmap of physician follow-up care Surveillance Interdisciplinary coordination between PCPs, specialists, and support services (i.e., CHH, Art Therapy, Rehab, etc.) Referrals Outcome: Individualized survivorship care plan that is provided to patient and PCP Identifying a teachable moment. Formulating an action plan to address risky lifestyle and/or habits.

22. Survivorship Education Better Choices, Better Health - Chronic Disease Management Classes Livestrong Survivorship Transitions Program Exercise/Pedometer Program 22

23. Encompass All Hospital and Community Resources Develop collaborations with other departments/programs/ organizations for chronic diseases. Bariatric departments for medical weight loss programs Home health and congestive heart clinics for chronic disease management programs Community council on aging for their programs Local advocacy organizations Hospital volunteers

25. A survivorship program needs an array of educational and support programs to reinforce the messages from the healthcare providers. Promoting these programs is vital, and different modes are better for different age groups. Classes that are in a series of several weeks are better to promote change because recruitment is much harder than retention.

26. J.B. A Case Example of a Survivorship Visit Diagnosed stage 1 breast cancer at 30 years old, single, no children, white, cosmetologist. Genetic testing: BRCA II positive Bilateral mastectomies plus six months chemotherapy, followed by reconstruction Out of work during chemo and surgeries; parents paid for health insurance during that time. She has now returned to work. Plans to schedule oophorectomy later. Wants to go back to school.

27. Snapshot View of J.B.’s Status Back to work but still fatigued 40 pounds overweight ( was 25 pounds overweight at diagnosis) Working full time but otherwise sedentary – not exercising Isolated – “I really feel different now compared to most of them who are busy raising families, and have husbands and normal looking bodies!” Has not scheduled appointment with gynecologist for oophorectomy (since she is BRCA II positive)

28. The Difference Survivorship Clinic Made for J.B. Discussed fears – oopherectomy Established risk reduction goals – Weight loss – Exercise - pedometer class Referral to new primary care physician Arranged GYN appointment Connected to survivorship group

29. Survivor’s Comments “Appreciate Survivorship Plan…gives a feeling of assurance that all has been and is being done to understand my needs….” “I will follow-up on suggestions, and this helped me to see my needs….” “I feel better knowing about my options and support groups available….” “This is a great program – needed to both hear it and have it on paper…” “Very helpful staff. I am appreciative of everyone’s help during my cancer treatment….”

30. References Carr, E.R. (2015). Oncology nursing essentials: Then and now. Clinical Journal of Oncology Nursing, 19(2), 223-225. Downs-Holmes, C., Dracon, A., Svarovsky, T., & Sustin, M. (2014). Development of a survivorship program. Clinical Journal of Oncology Nursing,18(5), 53-56. Grant, M., Economou, D., & Ferrell, B.R. (2010). Oncology nurse participation in survivorship care. Clinical Journal of Oncology Nursing, 14(6), 709-715. Institutes of Medicine. (2006). Executive Summary From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, D.C.: The National Academies Press. Lester, J.L., & Schmitt, P. (Eds.). (2012). Cancer rehabilitation and survivorship. Pittsburgh, PA: Oncology Nursing Society. Mayer, D.K. (2014). Survivorship care plans redux. Clinical Journal of Oncology Nursing, 18(6), 615-616. National Cancer Institute. (2014). SEER Cancer Statistics Review, 1975-2011, National Cancer Institute. Retrieved from http://seer.cancer.gov/csr/1975_2011/