Survivorship Programs and Activities in Alaska

1. SurvivorshipPrograms and Activities in Alaska Judith Muller ANTHC Cancer Program September 2012

2. Cancer Survivors in Alaska • Relative cancer survival rates for Alaska Natives are lower than for other populations • But in all races the number of cancer survivors is increasing • The physical, mental and spirtual impact of a cancer diagnosis mandates the development of programs to address the needs of survivors.

3. Alaska Native Tribal Health Consortium • Men’s Retreat for Prostate and Testicular Cancer Survivors • Camp Coho • Alaska Native Breast Cancer Survivors with Mastectomies • Traditional Food Guide for Cancer Survivors • Caring for Alaska Native Prostate Cancer Survivors • Behavioral Health Aide Curriculum on Survivorship • Cancer Support Groups

4. Men’s Retreat for Prostate and Testicular Cancer Survivors

5. Camp Coho • For children who have lost a loved one to cancer. • Two camps held in Anchorage in 2009 and 2010 • Use activities, a craft (memory box of loved one) and talking circle to help children talk about their loss.

6. Women with Mastectomies • 35 women gathered in Anchorage for lunch and a day-long gathering. • Information provided on prosthetics, exercise, lymphadema, sexuality and intimacy. • Time for conversation and sharing stories.

7. Traditional Food Guide • Written for cancer survivors to help them understand the nutritional value of traditional foods during their cancer journey. • Published in 2008 • Available at no cost to Alaska Native cancer survivors.

8. Caring for Alaska Native Prostate Cancer Survivors • Surveyed tribal health system regional health care providers • Purpose was to discern attitudes and practices surrounding the care of Alaska Native prostate cancer survivors. • Conclusions • Stacey Kelly, ANTHC (presenting author) won First Place Blue Ribbon in poster contest at the National Cancer Conference last week in Washington DC.

9. Behavioral Health Aide Curriculum • Funding from C-Change (a partnership of for-profit and non-profit organizations and the National Cancer Institute) to address ways to advocate for cancer issues. • The project focuses on collaboration between the cancer program and the Behavioral Health Program to develop a new BHA Curriculum: “How to work with Cancer Survivors.” • Intent is to provide a sustainable training curriculum for this unique group of health care professionals to improve their skills and ability to address emotional, physical and practical concerns of cancer survivors.

10. Support Groups • On campus through the Alaska Native Medical Center and SouthCentral Foundation • Also through American Cancer Society, Alaska Cancer Care Alliance, local hospitals and other non profits • Some target specific cancer such as Us Too for prostate and testicular cancer and Women Listen for women experiencing any cancer diagnosis. • Statewide in Fairbanks, Southeast Alaska, and Kenai Peninsula among others

11. State of Alaska Comprehensive Cancer Control Program • Statewide Cancer Survivorhsip Committee • Breast Cancer Survivor Survey • Prostate Cancer Survivor Survey • Survivorship Resource Plan for all of Alaska • 2010 BRFSS – Supplemental questions on survivorship.

12. Statewide Cancer Survivorship Committee • Survivorship listserve and regular meetings • Annual survivorship conference • Studied and evaluated survivorship plans • Coordinated efforts with LAF Live Strong Army

13. Assessing the Needs of Breast Cancer Survivors in Alaska • Survey completed April 2010 • Joint effort of the State CCC Program, University of Alaska Anchorage, Breast Cancer Focus and Providence Alaska Medical Center. • Purpose: to evaluate the unique needs of breast cancer survivors living in Alaska. • Major findings • Recommendations made to providers, advocacy groups, policy makers, and hospitals and other treatment facilities.

14. Prostate Cancer Survivorship Survey • Survey similar to the breast cancer survey. • Currently being written using experience gained in breast cancer survivor survey. • Planning to release survey next spring.

15. Survivorship Resource Plan for Alaska State of Alaska CCC program is developing a resource plan for survivorship. State has brought together survivorship stakeholders to help identify and prioritize survivorship concerns and opportunities. Priority areas identified include: • Develop culturally/geographically appropriate programs for cancer survivors • Promote use of clinical practice guidelines among primary care provides • Enhance survivor navigation services offered statewide • Encourage the use of survivor care plans.

16. 2010 BRFSS – Supplemental questions on survivorship • BRFSS is statewide telephone survey funded by the CDC to gather information from states about health behaviors. • For the first time in 2010 Alaska was given the opportunity to add questions directed to cancer survivors including questions about whether they received survivorship care plans. • Awaiting publication of those findings.

17. Many Other Active Partners • American Cancer Society • Alaska Cancer Care Alliance • Alaska Regional Hospital • Providence Medical Center • Other organizations including UsToo, Ride for Life Alaska, Mind Matters Research, Women Listen, and more