1. A Program of the UCLA-LIVESTRONG ® Survivorship Center of Excellence Patricia A. Ganz, M.D. UCLA Schools of Public Health & Medicine

2. UCLA-LIVE STRONG ® Survivorship Center of Excellence: Testing Models of Survivorship Care UCLA

3. Los Angeles County as a Laboratory Most populous and diverse county in the US –9,818,605 residents –74.5 % 18 years and older –10.9% 65 years and older –50.3% White, 8.7% Black or African American, 13.7% Asian, 0.7% American Indian or Alaska Native, 0.3% Native Hawaiian/Other Pacific Islander, 23.5% some other race, 4.9% two or more races; 44.7 % self-identified as Hispanic or Latino ; 27% non-Hispanic white –35.6% foreign born (source, US census data, 2010)

4. COE Management Team Internal RelationshipsExternal Relationships External Scientific Advisory Committee Community Advisory Board Internal Steering Committee Community Collaborators UCLA-LIVE STRONG® Survivorship COE Organizational Chart

5. UCLA/JCCC Perspective on Survivorship The Patients and Survivors program has as its major goal the reduction in avoidable morbidity and mortality among patients with cancer including long-term survivors Our research focuses on quality of life across the developmental life span and the measurement and evaluation of the quality of cancer care

6. and UCLA Medical Center Fifth ranked medical center in the US Best Cancer Care in California

7. VITA stands for.... “Vital Information and Tailored Assessment” The VITA Program is the clinical arm of UCLA-LIVESTRONG Survivorship COE http://vita.mednet.ucla.edu/

8. Fully accredited, full-service, 376 bed, nonprofit community medical center. The South Bay’s first hospital, founded in 1971 Highest recognition in the community for quality and state-of-the-art medical services in a 2004 survey conducted by National Research Corporation. Selected as a Top 100 U.S. Hospital (2004, Solucient). Accredited by the American College of Surgeons Cancer Program Hospital cancer registry, with 1300 incident cases/year Physicians at Health Care Partners Medical Group admit to TMMC

9. A 377-bed-state-of-the-art County facility built in 1987 In 1992, Olive View incorporated UCLA in its name becoming Olive View-UCLA Medical Center In May 1997, Olive View-UCLA Medical Center became a part of ValleyCare, a healthcare delivery system for the north San Fernando Valley, Los Angeles County Department of Health Services

10. Michelle Doose-Peña, MPH, CHES Program Coordinator UCLA Healthy Lives After Cancer Program …supporting teen & young adult survivors! Email: mdoose@mednet.ucla.edu Facebook: www.facebook.com/HealthyLivesAfterCancer Webpage: www.cancer.ucla.edu/HealthyLivesAfterCancermdoose@mednet.ucla.edu www.facebook.com/HealthyLivesAfterCancer www.cancer.ucla.edu/HealthyLivesAfterCancer

12. Fertility Preservation Services UCLA Survivorship Center NP attended MSKCC Conference in October 2011 and met with NP in charge of fertility services consultation Conducted survey among UCLA oncologists and other providers to assess knowledge and attitudes towards these services Working with reproductive endocrinologists to develop in house referral program as well as regional resources

13. CDC Funding Received in September 2011 for three years. www.facebook.com/YBCSprogram

14. Scope of Project

15. Needs Assessment Community Organization Assessment Patient / Survivor Interviews

16. 23 Community Organization Interviews Triple Step Toward the Cure

17. Needs Assessment – Community Organizations - Summary of Findings Gaps in services #1 – Programs targeted toward young adults 21-45 -Fertility -Early menopause/menopause symptoms -Sexual functioning issues -Body image -Managing work/career Gaps in services #1 – Programs targeted toward young adults 21-45 -Fertility -Early menopause/menopause symptoms -Sexual functioning issues -Body image -Managing work/career Top recurring issues -Fatigue -Fear of recurrence -Side effects of treatment -Chemobrain -Psychological issues -Fertility -Return to work Top recurring issues -Fatigue -Fear of recurrence -Side effects of treatment -Chemobrain -Psychological issues -Fertility -Return to work

18. Needs Assessment – Patient Interviews - Summary of Findings Gaps -Support groups for younger women -Fertility -Mentor/buddy matching program Gaps -Support groups for younger women -Fertility -Mentor/buddy matching program Recurring Issues -Fatigue -Cognitive issues – Chemobrain -Fear of recurrence Recurring Issues -Fatigue -Cognitive issues – Chemobrain -Fear of recurrence Needs -Coping with the “new normal” post treatment – long term survivorship -Healthy lifestyle changes -Support groups for younger women Needs -Coping with the “new normal” post treatment – long term survivorship -Healthy lifestyle changes -Support groups for younger women Total 18 interviews Age range (at diagnosis): 27 to 45 Age range (current): 29 to 54

19. Needs Assessment – Comparison of Findings Gaps in services -Programs targeted toward young adults 21-45 -Fertility -Early menopause/menopause symptoms -Sexual functioning issues -Body image -Managing work/career Gaps in services -Programs targeted toward young adults 21-45 -Fertility -Early menopause/menopause symptoms -Sexual functioning issues -Body image -Managing work/career Gaps -Support groups for younger women -Fertility -Mentor/buddy matching program Gaps -Support groups for younger women -Fertility -Mentor/buddy matching program Community OrganizationsBreast Cancer Patients

20. Needs Assessment – Comparison of Findings Recurring issues -Fatigue -Fear of recurrence -Side effects of treatment -Chemobrain -Psychological issues -Fertility -Return to work Recurring issues -Fatigue -Fear of recurrence -Side effects of treatment -Chemobrain -Psychological issues -Fertility -Return to work Recurring Issues -Fatigue -Cognitive issues -Chemobrain -Fear of recurrence Recurring Issues -Fatigue -Cognitive issues -Chemobrain -Fear of recurrence Community OrganizationsBreast Cancer Patients

21. Needs Assessment – Comparison of Findings Needs -Coping with the “new normal” post treatment – long term survivorship -Healthy lifestyle changes -Support groups for younger women Needs -Coping with the “new normal” post treatment – long term survivorship -Healthy lifestyle changes -Support groups for younger women Breast Cancer Patients

22. Needs assessment – Lessons Learned - Confirmed literature and clinical experience - Identified specific regional gaps in services - Helped to prioritize strategies for program development - Honing in on unique population needs that are difficult to address within large organizations

23. Internal Advisory Committee - Notes Priorities Fear of recurrence Coping with the “new normal” Chemobrain Fatigue Reproductive & fertility services Early menopause/menopause symptoms Sexuality & Intimacy issues Mission Statement

24. The Young Breast Cancer Survivorship (YBCS) program is dedicated to enhancing the health and wellness of young survivors of breast cancer. Our goal is to address the unique gaps in services that exist for this population by providing a regionally refined community resource listing of programs and services that cater to the specific challenges that young survivors face. The YBCS program especially focuses on psychosocial support services and educational programs aimed at providing education on coping with various psychosocial issues.

25. Next Steps – Program Implementation Psychosocial program development in process Online resource library Awarded grant funding from UCLA’s Clinical and Translational Science Institute (CTSI) Development of regional resources focused on reproductive services and fertility preservation

26. Media/Marketing Facebook Page www.facebook.com/YBCSprogram UCLA Jonsson Comprehensive Cancer Center Website www.cancer.ucla.edu/YBCS

27. Upcoming Events Survivor Education Day *Special YBCS afternoon session

28. Questions?