CPCRN Survivorship Workgroup

1. CPCRN Survivorship Workgroup Co-Leads: Colorado and Texas A&M

2. The Challenge and Mission… The CDC/LAF National Action Plan for Cancer Survivorship recommends that the Public Health Community “promote healthy life for cancer survivors including minimizing preventable pain and distress” Colorado and Texas A&M highlighted survivorship and health promotion as the core of their local activities as grantees within the CPCRN Network There is great opportunity in cancer control programs to improve long term health outcomes of cancer survivors

3. The Survivorship Workgroup formed (Texas and Colorado collaborating) A survey monkey was conducted in Spring of 2010; every CPCRN site responded and noted interest in at least one activity related to cancer survivorship 10 of the 26 individuals who responded to survey noted activities currently underway in the area of cancer survivorship Based upon enthusiasm and interest, a Survivorship Workgroup was formed…

4. SURVIVORSHIP WORKGROUP PRIMARY ACTIVITIES Current Activities (Health Promotion): • Survey • Scoping Study of Implementation Literature Potential Future Projects: • Linkage with CRC Cross Center Projects for Survivorship Care Planning • Focus Group Guide for Cancer Survivors • Chronic Disease Self Management Program

5. Translation and Dissemination-RE-AIM Framework Reach: • What populations are currently being targeted? • Are these populations representative of different cancers? Different age groups? Different socio-demographics? Methods: Survey, Scoping study Effectiveness: • What evaluation measures are being used? • How and where are results reported, and used? Methods: Key informant interview, Scoping study

6. Translation and Dissemination-RE-AIM Framework Adoption/Implementation: • Who is offering these programs (type of institution/training/etc)? • What are program components? • What are the barriers to program implementation? • How have programs been modified for cancer survivors? Methods: Key informant interview, Scoping study Maintenance: • Are programs designed to achieve long-term benefits at the individual level? • Are programs sustainable (funding, etc)? Methods: Key informant interview

7. Online Survey of Health Promotion The Effort:Conduct an environmental scan to identify healthpromotion programs available for cancer survivors throughout the U.S. (physical activity, nutrition/weight management, psychosocial support) To Determine the: • programs available • number and type of patients served • components of programs • use of evidence-based strategies. • collect an inventory of resources to identify gaps in services • inform cancer planning and state-wide comp cancer programs

8. Why: • Evidence indicates physical activity and weight management are important in cancer survivorship • ACSM has new evidence-based guidelines (May 2010) and ACS has consensus recommendations (2006) for physical activity, but it is not known if these are being/have been adopted • Fatigue, physical inactivity, weight gain, distress and depression are common after cancer but few programs available (and based on what evidence?) • No one has published a comprehensive snapshot of who is doing what, and where – and this would help move the field forward and assist with resource allocation

9. How: • Key word search to identify programs conducted in Spring 2010, including same key words for all CPCRN states • Internet search to identify entities and institutions to receive survey • Primary Survey Components: • Description of Program/Entity • Demographics of Patients Served • Program Elements • Structure of Program • Identification of Others to Complete Survey • Contact Information for Key Informant Interview

10. How (Cont…): • Survey approved by Colorado IRB • Piloted in Colorado in late August 2010 • 38 programs identified; 17 responded thus far • Sample Respondent Characteristics: • At least one group serving every demographic and cancer type • Largely Urban but Some Rural Community • Types of Institutions and Entities: Hospital Based Programs NCI Designated and Community Cancer Centers Physical Rehab/Physical Activity Practice YMCAs and Recreation Centers

11. Who: • Colorado Initiated the Process • Colorado, Texas A&M, MD Anderson to start –potentially all CPCRN sites • Medical student in Colorado to conduct key informant interviews but Colorado open to partnerships

12. Texas Experience: • Collaboration between CPCRN sites at Texas A&M and UT Houston with endorsement from MD Anderson and the Cancer Alliance of Texas • Recruitment email and introduction were made Texas specific, listing partners and endorsements • Partners suggested minor changes to Colorado version of the survey. • Recruitment email will be sent by Texas A&M, data will be collected at Colorado • Currently seeking IRB exempt approval in Texas

13. How Your CPCRN Site Can Participate: • Preview Survey (Handout) • Tailor Survey Intro and Invite Letter Specifically to Your State • Colorado Can Provide Key Word Search Results for each state • Informant Interview to Be Conducted in Colorado or Potentially By each Specific State

14. Scoping Study of Cancer Survivorship Health Promotion The Effort: Conduct a scoping study* of theimplementation literature regarding health promotion in cancer survivors. To serve as a guide to funders, public health professionals, practitioners, and cancer survivors as a summary of the state-of-the art when designing, implementing, and utilizing programs. *methodology to gather both published and grey literature to identify gaps. Arksey, H. and O'Malley, L. (2005) Scoping studies: towards a methodological framework, International Journal of Social Research Methodology, 8, 1, 19-32.

15. Why: • Published systematic reviews of exercise and other health promotion programs include only RCTs, though many other projects are underway and would be valuable to learn from them • No summary of state-of-the-art available to guide implementation Who: • Colorado, Texas A&M, University of Washington • Colorado Medical Student Internship

16. Research Questions for the Scoping Study What are current physical activity and exercise interventions that have been implemented and/or designed in cancer survivor populations? Future efforts may include other wellness interventions (e.g. nutrition, psychosocial support) What are the components and results of these studies, and do they show positive impact or significant improvement in their tested populations? How have these interventions been adapted for use on a large scale or for the cancer survivor population?

17. How: • Key word search (identified over 100 published articles) using PubMed, Medline, Google Scholar • Internet search of programs and outreach (by phone and email) to uncover evaluation reports and other data not yet published using Google search engine • Reporting rubric to summarize program components • Synthesis of findings (outreach to other CPCRN investigators to join)

18. Results of Literature Review Key Words: “cancer survivor evidence based exercise” 36 results on 8/22/2010 “cancer survivor exercise” 94 results on 8/18/2010 “cancer survivor exercise health promotion” 46 results on 8/23/2010 “cancer survivor exercise translation” 3 results on 8/23/2010 “cancer survivor exercise implementation” 5 results on 8/23/2010

19. How Your CPCRN Site Can Participate: • Assist in searching for literature and filling out the rubric • Assist in searching the gray literature; or • Playing a role in the synthesis of the information found

20. PARTNERING WITH CROSS CENTER PROJECTS The Chronic Care Model and the Patient-Centered Medical Home Initiative, are both of high interest in the cancer survivorship community.   In particular, issues of care coordination, patient self-management, and communication between primary and specialty care providers are key elements in these transformative models also relevant to cancer survivorship. 

21. Partnering With Cross Center Projects • Information about stage and diagnosis/treatment collected in the CRC screening program could in turn be used to provide patients with basic information for their Survivorship Care Plan- what an opportunity to have the evaluation data be used by the patients themselves! • ·Patients consented for the CRC screening program could also be consented at that time to be included in a survivorship registry, which is one of the IOM’s recommendations for advancing survivorship research; • ·Adding some important but minimal common elements/variables to the E-Cast evaluation tool regarding survivorship (e.g.  linkage to state vital status records to track survivorship, recording primary care physician of record, date of last contact, survivorship resources/care planning provided?).

22. Snowball Sampling Method Existing subjects recruit future subjects from within their own network Best used where resources or experts may be hidden, such as in an emerging field Can identify current and future stakeholders, and facilitate networking Results are not fully indicative of all members of target population, but provide a reasonable snapshot in time

23. Description of Sampling Step 1. Identify and contact key stakeholders Colorado Activity Conduct key word internet search (see handout) Ensured that list included reputable programs and experts we knew of through our own activities

24. Sampling Step 2. Distribute survey to initial list to start “snowball” and continue to gain more contacts. Colorado Activities Included request for new contacts in the cancer and exercise “community”.

25. Description of Sampling Step 3. Widen the profile of the sample to gain more stakeholders. Colorado Activities (Current) Contacted State Cancer Coalition to send survey to their listserv Reached out to national contacts at LAF/YMCA for future survey distribution Texas (both CPCRN sites) will jointly distribute survey Other CPCRN sites obtain IRB approval?