1. Taking Cancer Survivorship to a New Level Dr. Dianne Alber, Clinical Psychologist Carol Frazell RN, BA Admin., OCN,CHPN

2. NCI 3 rd Survivorship Education for Quality Cancer Care Conference 53 teams including 155 participants Physicians, psychologists, nurses and social workers Overview of survivorship needs Reports from past participant teams on survivorship activities in progress Train the trainer Analyze own institution and begin to set survivorship goals for own institutions

3. Survivorship is becoming an expectation of centers offering quality cancer care.

4. Four Essential Components of a Survivorship Program Prevent recurrent cancers and side effects Surveillance for cancer spread, second cancers, and late and long term effects Intervention of cancer effects such as lymphedema and neuropathy Coordinate post treatment care between specialists and primary care providers so that we can optimize the survivor’s quality of life

5. The NCI established an Office of Cancer Survivorship in 1996.

6. NCI Survivorship Goals Enhance the length and quality of survival of all cancer survivors Support research that helps us understand, prevent, or reduce adverse physical, psychosocial, and economic outcomes associated with cancer and its treatment Educate professionals about issues related to cancer survivorship

7. NCI Survivorship Goals (continued) Identify, examine, prevent, and control adverse cancer-treatment-related outcomes Provide a knowledge base regarding optimal follow-up care and surveillance of cancer survivors Optimize health after cancer treatment

8. Cancer Survivors- Who are they? There are 11 million cancer survivors in the United States 60% are age 65 or older 40% are age 40-64 5% are 20-39 1% are <19 64% of newly diagnosed cancer patients expect to survive beyond 5 years after diagnosis

9. What are Cancer Survivors telling us? They want to know what they need to do to stay healthy. They are worried about insurance and money. They are worried about their family.

10. They want to return to a normal life. That’s all cancer patients want!

11. What are some of the challenges Cancer Survivors face? Relationship Changes –58% had loss or decrease in sexual desire and function –25% had dating problems Financial Challenges –43% had to deal with decreased income –25% went into debt 2005 ASCO Annual meeting, Health Services Research, SN Wolff, C Nichols, D Ulman, A Miler, S Kho. Armstrong 1020 self-identified cancer survivors

12. Challenges (continued) Employment challenges 32% deal with lack of advancement 34% feel trapped in a job because of health insurance 81% did not make a career change 2005 ASCO Annual meeting, Health Services Research, SN Wolff, C. Nichols, D Ulman, A Miler, S Kho. L Armstrong 1020 self-identified cancer survivors

13. Family Impact of Dealing with Cancer Percent saying the experience had the following effects on their family 32%: Caused someone in family to have psychological problems 25%: Caused severe strains with other family members 22%: Caused someone in family to have a lower income 19%: Caused someone to lose or change jobs USA Today/Kaiser Family Foundation/HarvardSchool of Public Health, conducted August 1-September 14, 2006, 930 respondents who have someone in home who has been diagnosed with cancer

14. Financial Costs of Cancer 25%: Used up all or most of savings 13%: Borrowed money from relatives 13%: Contacted by a collection agency 11%: Sought the aid of a charity or public assistance 11 %: Borrowed money/ got a loan USA Today/KaiserFamily Foundation/Harvard School of Public Health

15. Getting Started Identify the physical and psychological effects of cancer and its treatment Develop a plan to manage these effects Develop health promotion recommendations Create a treatment summary and follow-up care plan for patients Develop an exit interview process

16. Post Treatment Late Effects Late Effects are toxicities of treatment that are absent or sub clinical at the end of therapy but manifest later. –Injury to organs or failure to compensate –Second Cancer –Abnormal liver or renal function

17. Post Treatment Long Term Effects Long Term Effects are chronic or persistent effects that appear during treatment and continue beyond treatments end. –Cancer related fatigue –Peripheral Neuropathy –Cognitive challenges.

18. Dimensions of Quality of Life Physical Well-Being & Symptoms –Functional Ability –Strength/Fatigue –Sleep & Rest –Nausea –Appetite –Constipation/Diarrhea –Neuropathy

19. Psychological Well Being Control Anxiety Depression Enjoyment/Leisure Fear of Recurrence Cognition/Attention Distress of Diagnosis and Treatment

20. Social Well Being Family Distress Roles & Relationships Affection/Social Function Appearance Enjoyment Isolation Finances Work

21. Spiritual Well Being Meaning of Illness Religiosity Hope Uncertainty

22. NCI Community Cancer Centers Program General Areas for Survivor follow-up care Prevention 1. Promote Good Health Behaviors 2. Diet 3. Smoking Cessation 4. Lifestyle Changes 5. Physical Activity

23. Exercise Therapy for Cancer Patients Emerging research shows that cancer patients who exercise experience decreased risk of treatment-induced fatigue, lymphedema, depression, and anxiety, as well as improved functioning and greater self-reported overall wellbeing and quality of life. Watch Interviews, 7/15/08; 8.28.08; Lance Armstrong Foundation website, accessed 9/10/08

24. Follow-up Care (continued) Detection 1. Follow-up care 2. Screening for recurrence or second cancers 3. Comorbid conditions 4. Screening for high risk families

25. Follow-up Care (continued) Management of Long Term and Late Effects Pain Cognitive Function Sleep Disturbance/Fatigue Sexual Dysfunction Organ Function (Renal/Cardiac) Family needs-psychosocial/caregiver burnout

26. Who provides the care to meet Survivors needs? Prevention Detection/Surveillance Management of Late and Long Term Side Effects

27. PCP vs. Oncologists Primary Care Physicians follow-up on conditions such as diabetes and heart disease Oncologists follow-up on prevention behaviors, detection and management of the late and long term effects of cancer treatment

28. How do we meet those needs? Providing the necessary care within the framework of your institution Find the best models of care

29. Models of Care Shared Care Model Disease Specific Cancer Survivor Programs Comprehensive Survivor Programs

30. Shared Care Model: PCP vs. Oncologists Primary Care Physicians follow-up on general conditions such as a cold; may refer patient to internist for diabetes, heart disease and other related health conditions, etc. Oncologists manages cancer detection, prevention and management of cancer side effects

31. Disease Specific Model Example: Colorectal Team follow-up and management of cancer survivorship plan Colorectal Surgeon Medical Oncologist Radiation Oncologist Colorectal Nurse Coordinator or Navigator

32. Comprehensive Cancer Survivorship Model Use Multidisciplinary Team approach to care Surgeon Oncologists Nurse Coordinator or Navigator Psychologist Dietician Wound and Ostomy Nurse Social Worker

33. Cancer Survivorship Tools Summary of Cancer Treatment and Follow-Up Plan Survivorship Patient Assessment Cancer Survivorship Interview

35. When you do nothing, you feel overwhelmed and powerless. But when you get involved, you feel the sense of hope and accomplishment that comes from knowing you are working to make things better.--Pauline R. Kezer