CPCRN Survivorship Workgroup April, 15 th 2013 Betsy Risendal, PhD University of Colorado Cancer Center Marcia Ory, PhD, MPH Texas A&M Health Science Center This presentation was supported by Cooperative Agreement Number 1U48 DP from the Centers for Disease Control and Prevention. The findings and conclusions in this presentation are those of the author(s) and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

Survivorship Workgroup: Scientific Accomplishments Completed Survey of Health Promotion Programs for Survivors: Results presented at CDC Cancer Conference and to CPCRN in 2012 Scoping Study of Physical Activity Programs for Survivors (maintenance- focused review) Underway Survey Manuscript – Program lists being used by state cancer coalitions in CO and TX for resource directories; also used to inform state cancer plan in CO; highlights opportunities for dissemination of programs Scoping Study Manuscript – Contributes new knowledge on maintenance aspects and used new practice-focused method for gathering of evidence not limited to RCTs

Visibility of CPCRN Survivorship Workgroup Activities Essential Elements of Care Consensus: CPCRN Survivorship Workgroup Co-chairs participated (September, 2011); possibility to contribute to toolkit under development Self-management and Survivorship (with Stanford Patient Education Center; ACS conducting, June 2011-current) Coordination with LIVESTRONG PRO Project (December, 2011) Healthy Aging Network Webinar on Survivorship and Aging (March, 2012) AYA Survivorship Smartphone and Tablet App (March 2012) Posters (2) and Presentations (3) at Biennial Cancer Survivorship and CDC Cancer Conferences (Summer, 2012) Coordination with LIVESTRONG PRO Project (December, 2012) Awareness of Survivorship (Colorectal Cancer Roundtable, Fight Colorectal Cancer- various, ) Educational Workshop on Models of Survivorship Care (APOS; February 2013) State/Regional Surveys of Survivorship Care Planning: New England (M. Proutt), Georgia (J. Lipscomb), South Atlantic States (S. Birken), Colorado (*Planned; B. Risendal and A. Dwyer) *Opportunity to build in new D&I questions and replicate in other CPCRN states/regions

Survivorship Care Planning (SCP) Research Activities 1.Several U.S. states/regions part of the CPCRN are among the first to document reach & adoption of SCPs: Massachusetts (M. Proutt, 2012) - Over half of the108 providers surveyed indicated they prepare or receive treatment summaries, but only 14% prepare and 16% receive care plans. Authors concluded support with training and templates needed to disseminate care plans. (Note: The survey was a f/u to regional summit on survivorship by the MA Comp Cancer Control Coalition.) South Atlantic States (S. Birken, 2013) – Less than ¼ of providers reported using an SCP, although 86% of the 23 programs surveyed reported SCP use. Insufficient resources and systems for SCP use were cited as barriers to their use and dissemination.

Survivorship Care Planning (SCP) Research Activities Georgia Comp Cancer Program Survivorship Group (including J. Lipscomb; presented at the 2013 APOS meeting) – 21 question survey administered to CoC- accredited hospitals in Spring 2012 to assess efforts and barriers in meeting CoC Guideline for SCPs; toolkit to be developed to assist dissemination. Colorado (B. Risendal and A. Dwyer, 2012-current) - Received funds from state comp cancer program to study state of SCP implementation and barriers, and discern role for state cancer coalition to aid in dissemination and use.

Survivorship Care Planning (SCP) Research Activities 2.CPCRN sites involved in several activities to document effectiveness and implementation/use: UNC/Chapel Hill rec’d 1 of 2 SIPs (CDC) to study patient and provider impact (D. Mayer, PI ); published results (2012) support other research indicating that SCPs alone are not enough to impact health services outcomes and ease transition to survivorship Mixed methods study found that only 2 of 13 LIVESTRONG participating sites in their network achieved >75% concordance with IOM recommendations for SCP content (Stricker, Jacobs, Risendal, Ganz et al. 2011)

Survivorship Care Planning (SCP) Research Activities 3. Selected SCP Activities: CDC-led invited paper to CEBP special survivorship issue (Pollack, Hawkins, Peaker, Buchanan, Risendal ) suggests D&I frameworks for harmonizing assets across settings and integrating new and promising practices into routine care delivery systems NCI/ACS Survey of Physician Attitudes Regarding the Care of Cancer Survivors (SPARCCS; Earle et al. 2013) found that oncologists and PCPs have different preferences for models of care ACS/GW Collaborative National Survivorship Resource Center (funded by CDC cooperative agreement) including 4 workgroups with ongoing activities

Interest in Survivorship Care Planning among CPCRN sites (n=18 including 8 sites; surveyed December, 2012) Readiness (26%) Implementation (0%) Dissemination to Primary Care (33%) Outcomes (10%) Models of Care, Navigation (0%)

Interest in Survivorship Care Planning among CPCRN sites (n=18 including 8 sites; survey conducted December, 2012) Readiness (26%) Implementation (0%) Dissemination to Primary Care (33%) Outcomes (10%) Models of Care, Navigation (0%)

Areas of Survivorship Care Planning Research among CPCRN sites (n=6; survey conducted April, 2013) Areas of Current Research (n=4) Readiness (2, 50%) Awareness (2, 50%) Implementation (3, 75%) Facilitators/Barriers (3, 75%) Other (2, 50%) Areas of Planned Research (n=4) Readiness (1, 25%) Implementation (2, 50%) Awareness (2, 50%) Barriers (1, 25%) Additionally, strong interest in dissemination to primary care was theme on recent workgroup conference call (4/8/2013)

Future Directions: Timing is Everything…. CoC mandate for survivorship care planning activities (initially for 2014; now effective for 2015) Evidence is starting to grow: 2 of 3 published RCTs on care planning published in 2013 Possible other national surveys being developed (CoC, ACS/GW, others?)

Future Directions Topic: Survivorship Care Planning readiness +/- interface with Primary Care Possible Activities: o Build on planned activities in Colorado which include mixed-methods approach (survey of SCP implementation + KI interviews with recipients) o Complement research by Sarah Birken at UNC by focusing on readiness aspects o Work with other national groups conducting surveys to either conduct/help develop planned surveys or fill a gap in knowledge

Questions for Steering Committee Goal is to have CPCRN seen as a key player in this area and to build upon ongoing efforts: How can we be sure to connect our proposed activities to national efforts? How can these activities dovetail with other CPCRN workgroups? How can Survivorship Workgroup activities further connect and support CDC-funded comp cancer programs in each state? What are the most interesting and pertinent D&I questions to include in planned survey, as well as other activities? How can we best take advantage of opportunities to prospectively study D&I science with roll-out of survivorship care planning mandates (beyond ideas previously discussed?) What other ideas do you have for dissemination products for these activities? Persons/Organizations to contact?