Shaken, Stirred, Movin ’ On The Young Adult Cancer Experience

1. Shaken, Stirred, Movin’ OnThe Young Adult Cancer Experience Brad Zebrack, Ph.D., MSW University of Michigan School of Social Work and Comprehensive Cancer Center Ann Arbor, Michigan

2. Shaken

3. Life Changes “This is what I picture…this is really weird, I see, like, a grave, and that’s the person that died, on August 4th. She’s gone. Because you know, my life had to change, I had cancer and I can’t go back there, I can’t go in the past, so it’s like, she’s gone.”

4. How has cancer affected your life?

5. Life Before Cancer Family Hopes and Dreams Identity Friends/ Relationships Spiritual Life YA before cancer entered life Self- esteem Sense of security Optimism Work Leisure Time Sports Hobbies Dating

6. What’s Supposed to Happen in Your 20’s and 30’s Establishing independence Forming identity, becoming comfortable with who you are Relationships (friends, family, love) Beginning your own family Jobs and careers Finding your place in the world Taking responsibility, making independent choices

7. CANCER

8. Universal Disruptions of Cancer Altered relationships Dependence – Independence Issues Life achievement disruptions Impact on body, sexual image and integrity Existential issues/meaning of life

9. Depression Family Anger Finances Sense of security Work Scans and Tests Uncertainty Unknown Life Following Cancer Diagnosis Hospital Life Tons of Info- Yikes!! Anxiety World of medicine Loss of Health Loss of control Body image Friends Fear • = Things in your life that existed before cancer that have changed • = New practical issues  = New emotions Mortality Self- Esteem

10. Stirred

11. …Perspectives from young adult cancer patients & survivors • Some people are uncomfortable around me. • “So, how are you?...Really.” • Now what am I going to do with my life? • I’m different.

12. Perspectives from young adult cancer patients & survivors… • Everyone in support groups is at least 20 years older; overwhelmingly breast cancer patients. • Hospital volunteers are primarily very nice people grandma’s age. • Few opportunities to meet other young adults. • Some of the young people you meet die.

13. From a Young Adult who had attended a support group… “I mean, some people [in the support group] were as old as 75 and 80 years old, and like coming to terms with their death. And I’m trying to come to terms with how I’m going to live through this.”

14. Bottom line? Dealing with cancer as a teenager or young adult can be LONELY.

15. Bleyer Why a specific focus on adolescents and young adults (AYAs)? Mind the Gap Thanks to Archie Bleyer, MD, MD Anderson Cancer Center, Houston, TX • Who are they? • Ages roughly 15-44 • Why the special attention?

16. 11.4 Million Survivors

17. Characteristics of the 11.4 Million Survivors Estimated Number of Survivors by Diagnosis, 2006 Age Distribution, 2006 <19 Years (1%) 20-39 Years (4%) Other (11%) Female Breast (23%) Thyroid (4%) Melanoma (7%) 40-64 Years (35%) 65+ Years (60%) Urinary (7%) Prostate (20%) Hematologic(8%) Colorectal (10%) Gynecologic(9%) Source: National Cancer Institute, National Institutes of Health. Estimated US Cancer Prevalence. Accessed July 27, 2009, from http://dccps.nci.nih.gov/ocs/prevalence/prevalence.html

18. Remarkable Past Progress Childhood Cancer Mortality: 1950-1998 Age < 15 Years Bleyer, 2006

19. Remarkable Past Progress Childhood ALL Survival Rates: 1960-1997 Age < 15 Years SEER (9 areas) http://seer.cancer.gov/

20. Bleyer 2.38% 1.72% 1.60% AYA Gap - 0.27% Relative Change in 5-Year Survival1975 to 1997, SEER 2.4% The Great Divide 1.8% Average Annual%Increase All Age Average = 1.5% / yr 1.2% 0.6% 0% 0 5 10 15 20 30 35 40 45 50 55 60 65 70 75 25 -0.3% Age at Diagnosis (Years)

21. Bleyer Why? National Cancer Mortality Reduction1990-1998 3% 2.8% 2.6% Average Annual% Reduction 1.8% 2% 1.5% 1.5% 1.1% 1% 0.9% 0.4% 0% 0-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39 Age (Years)

22. Bleyer Clinical Trial Gap

23. National Cancer Mortality Reduction, 1990-1998 Bleyer Accruals 25% 20% % Mortality Reduction Cancer Mortality Reduction 15% 3% 10% 5% p = .001 2% 0% 1,000 10,000 Accruals 1% 0% National Treatment Trial Accruals, 1990-1998 11689 12,000 7875 8,000 6733 4786 3837 4,000 3532 1491 1071 0 0-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39 Age (Years) Bleyer, 2006 Clinical Trial Data courtesy of Montello M, Budd T, CTEP, NCI

24. Bleyer Health Insurance Gap

25. Bleyer 2.2% 2.0% 1.5% Ave. Annual % Cancer Mortality Rate Reduction, 1990-1998 1.1% 1.0% 0.9% 0.4% 0% 0-19 20-24 25-29 30-34 35-39 Percentage of the U.S. Population >65 Years of Age who are Insured, according to Age 90 80 % Insured 70 60 50 0-17 18-24 25-34 35-44 45-54 55-64 - Age (Years)

26. Bleyer Referral Gap

27. Bleyer Management Sites of Cancer Patients, U.S. 100% 80% 60% Community Sites 40% 20% Tertiary Cancer Centers* 0% *academic medical centers, etc. <15 15-40 >40 Age (Years)

28. Bleyer Facilities Gap

29. Bleyer AYA Gap Facilities & Services Gap Childrens Hospitals and Facilities Adult Patient Hospitals Community-based Practices 0 15-19 30-34 70+ Age (Years)

30. Bleyer Psychosocial Gap

31. Psychosocial Needs* *Zebrack, B., Bleyer, A., Albritton, K., Medearis, S., & Tang, J. (2006). Assessing the health care needs of adolescent and young adult (AYA) cancer patients and survivors, Cancer, 107(12), 2915-2923. Support from family and friends Age-appropriate information Ability to assume responsibility Opportunities to meet other YA survivors Counseling and support

32. Psychosocial Needs* *Zebrack, B., Bleyer, A., Albritton, K., Medearis, S., & Tang, J. (2006). Assessing the health care needs of adolescent and young adult (AYA) cancer patients and survivors, Cancer, 107(12), 2915-2923. Adequate health insurance To keep hopes and dreams alive Ability to communicate with spouse/partner Ability to express feelings Maintain sense of control Stay involved in social activities Manage uncertainty

33. Addressing the Unique Needs of Adolescents and Young Adults with Cancer

34. Needs Assessment • Zebrack, B.J. (2009). Information and service needs for young adult cancer survivors, Supportive Care in Cancer, 17, 349-357. • Zebrack, B.J. (2008). Information and service needs for young adult cancer patients, Supportive Care in Cancer, 16, 1353-1360. • Assessing the health and supportive care needs of young adult cancer patients and survivors • Need for resources and services • Unmet need

35. Who are they? n=1,088 Gender 24% male, 76% female Education 64% College grad Marital/Partner status 61% married/partner Current age 40% 18-29 60% 30-39 Employment status 74% employed ft Work, home, school Various cancers 23% breast 28% HD; 15% NHL 16% Bone tumors/Other sarcomas 7% Testicular 80% off-treatment Age at diagnosis 37% 15-24 years 63% 25-35 years Years since diagnosis 24% < 2 years 49% 2-5 years 27% > 5 years

36. Total & Unmet Needs of AYA Cancer Patients and Survivors

37. Total & Unmet Needs of AYA Cancer Patients and Survivors

38. Total & Unmet Needs of AYA Cancer Patients and Survivors

39. Total & Unmet Needs of AYA Cancer Patients and Survivors

40. Total & Unmet Needs of AYA Cancer Patients and Survivors

41. Total & Unmet Needs of AYA Cancer Patients and Survivors

43. Conclusions Most YAs want age-appropriate information Needs for psychological support, self-care, health care and family support are largely unmet

44. Conclusions Need for concrete services (child care, transportation), while small, did NOT differ by SES Need for alcohol/sub abuse services is evident, and perhaps under-reported Many service needs occur within a social or peer context

45. The importance of social relationships and peer support

46. Cognitive and Social Development Social relationships and peer support are imperatives for the healthy growth and development of adolescents and young adults • Self-identity • develops in relationship to, or identification with, a group • Making friends • Not just “nice” • Necessary for emotional health and well-being • Health behavior benefits (peer influences)

47. Value of Peer Support • Groups quickly develop cohesion. • Peer support programs (e.g., adventure therapies, retreats, camps) improve self-confidence, independence, and social contacts. See Roberts et al., 1997; Elad, Yagil, Cohen & Meller, 2003

48. Coping with uncertainty Dependency versus autonomy Social exclusion, isolation Body image Intimacy, sexuality and fertility Employment, education Peer Support Opportunities To address areas of common concern See Roberts et al., 1997

49. Young Adult Survivors Conference (YASC) – A Peer Support Model • 35 Participants • 18-39 years old • Diagnosed as AYAs

50. Our Goals Address survivorship issues Provide education and tools for advocacy Build bridges of support among young adult cancer survivors Their Goals Have fun Meet other survivors Understand more about their cancer and potential late effects Learn about how to “tell my story so that it will help others.” Program Goals