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The Perceptions, Beliefs, and Practices of Administrators of CoC-Accredited Cancer Care Programs Regarding Cancer Survivorship Care Plans F. Jeannine Everhart, PhD, MPH, MBA, MS, CHES Jefferson College of Health Sciences at the Carilion Clinic Virginia, Roanoke Financial Disclosure I have no personal financial relationships with commercial interests, relevant to this presentation, to disclose. F. Jeannine Everhart, PhD Learning Objectives Discuss the current state of implementation for cancer survivorship care plans (SCPs) Describe cancer program administrators perceptions of SCP outcomes Report key predictors and correlates for SCP implementation success

Background and Purpose Cancer 2 nd leading cause of death in the US 1 The number of cancer survivors growing 19 million by 2024 2 Cost to the health care system By 2020, nearly $300B annually 3 Survivors" Long term physical, mental, financial, social issues 3 Institute of Medicine (IOM) publication (2005) 4 High-level plan to address survivor needs Survivorship care plan (SCP) one component

General IOM Guidelines 4 Every eligible cancer patient receives an SCP SCP includes Treatment summary Long-term plan Suggested screenings Education for self-care Diet, exercise guidelines Quality of life resources Full Implementation Current Problems with SCPs 5 Standards on SCP often not well understood 5 Implementation can be expensive and difficult 5 Supporting systems Staff Poor evidence regarding SCP effectiveness Limited research Mixed results Purpose of the Study The purpose of this study is to identify cancer center program administrators perceptions, beliefs, and practices regarding SCPs and how these factors impact the policies and practices of the cancer centers.

Methods Study Design Cross-sectional, mixed method, nonexperimental design utilizing both telephone interviews and a theory-based electronic survey. Methods Elicitation Research Ten open-ended questions 30 minute interviews, n=22 Written Survey Population sample of CoC Cancer Programs admins (n=1,158) 46 items, 7 sections Electronic survey using Qualtrics

Inclusion and Exclusion Criteria Inclusion criteria: CoC Cancer Administrators Could be passed to administrative subordinates Exclusion criteria: Administrators over multiple programs Administrators from interviews or pilot study Data Collection To maximize return rate 6 Lottery of five $100 drawings (Amazon gift card) Personalized e-mails directly to respondents e-mail addresses Signed letter of support from the CoC 10 Reminders: 10-Nov-2016 through 15-Jan-2017 CoC Assisted by publicizing national newsletter Data Analysis Analyze using SPSS 23.0 Descriptive statistics Spearman s rho correlation Odds Ratio, Chi Square Kruskal Wallis H Similar to One-way ANOVA Mann Whitney U test Similar to Independent t-test Ordinal, Linear, Logistic Regression

Results, Discussion, Conclusions, Recommendations Respondents (response rate n=575, [51.4%]) Male, 19.70% Female, 80.30% Assoc, 5.8% Doc, 7.0% HS, 0.9% Other, 2.4% White, 92.5% Asian, 2.3% Black, 2.8% Bachelors, 23.2% Masters, 63.2% Mean age: 51.9 96.7% Non-hispanic Time accredited by the CoC 3 years or more 91.3% Cancer Programs Type of Program Comprehensive Community Cancer Program 46.7% Community Cancer Program 24.9% Academic Comprehensive Cancer Program 15.1% Setting of facility Urban 39.9% Suburban 34.6% Rural 25.4% Profile of patients Urban 44.9% Suburban 57.1% Rural 57.2%

Program Sizes Support for SCPs Cancer Facility Support Most (90.9%, n=500) respondents reported that their facility had an EMR or EHR Only 44.4% (n=244) reported that the SCP information was contained solely within the EMR/EHR Other: manually-generated, collected, or uploaded 80% of accredited centers: less than 3 full-time equivalent employees to handle these time consuming tasks Support for SCPs Physician Support

Support for SCPs Physician Support Providers typically not directly employed by the cancer facility Directly employed Most: medical oncologists (51.8%, n=293) Least: primary care physicians (29.9%, n=169) Less than half of providers were directly employed by the facility Support for SCPs Policy: CoC Support CoC guidelines clear? Agree: 66.6% Disagree: 33.4% CoC timelines realistic? Agree: 35.7% Disagree: 64.3% SCP Practices and Policies Full Implementation 95.1% (n=547) of respondents were delivering SCPs to at least some of their cancer patients 21% (n=120) were providing SCPs to all eligible cancer patients, regardless of cancer type 11.3% (n=62) were fully implementing SCPs

Outcome Expectations If your program were to provide each of your cancer patients with the ideal survivorship care plan (SCP) HOW LIKELY do you think it is that each of the following outcome would occur? Improvement in Patient-provider communication 74.1% Patient knowledge and understanding 74.1% Patient satisfaction 70.4% Patient adherence and self management 63.5% Not likely to Patient health outcomes 52.6% prevent recurrence Likely/Highly Likely What Factors are Associated with Full Implementation? Independent Variable Statistically Significant CoC guidelines are clear Wald χ 2 = 4.670, p < 0.05 CoC timelines are realistic OR=2.13, 95% CI, 1.288 to 3.518, p < 0.01 Time SCPs have been in place OR=0.572, 95% CI, 0.353 to 0.935, p < 0.05 Staff dedicated to SCP creation/dissemination OR=0.574, 95% CI, 0.330 to 0.997, p < 0.05 Administrators who felt the CoC timelines were realistic were twice as likely to be in programs with a higher stage of readiness to fully implement SCPs What Factors Predict Full Implementation? Independent Variable Statistically Significant CoC guidelines are clear Wald χ 2 (1) = 6.1, p =.013 Patient health status outcomes Wald χ 2 (1) = 4.1, p <.043 Program type Wald χ 2 (3) = 9.503, p <.023 Of these, perceived CoC guideline clarity was most significant predictor Academic cancer programs were 3x more likely to have fully implemented SCPs than community-based programs

What Factors Affect (Correlation) Outcome Expectations? What Factors Predict Outcome Expectations? Discussion Key issues Policy Resources and Staffing Influences associated with outcome expectations A common theme that connects each of these is staffing levels

Policy CoC guidelines and timelines add pressure Mandates can add focus and help an organization effect change 7 Mandates without adding resources can create resentment and resistance 7 Resources and Staffing Need for systems to create/maintain SCPs Staffing for creating and delivering SCPs Taxing to an already overworked clinical staff Difficulty when patients are far from the facility Support from health care providers Lack of physician buy-in Fragmented employment model Staffing Influences Regarding Outcome Expectations Administrators who had stronger outcome expectations for patient outcomes were more likely to be in programs that were at a higher stage of readiness to fully implement SCPs Administrators outcome expectations were often interwoven, and perhaps influenced by, operational or monetary issues

Implications/Recommendations Some staffing needs may be alleviated as the technical resources mature and become easier to use Engage a physician champion, if possible Continue research on models of delivery More research is needed on physician perceptions Implications/Recommendations Examine long-term surveillance of patients who are moving on their journey past the initial treatment Non-clinical tasks are needed, but are not yet a focus 8 When possible, offload work to non-clinical staff such as health/patient educators Utilize local community assets, when possible/feasible Areas for Future Research Physician outcome expectations regarding SCPs Survivor outcome expectations regarding SCPs Ecological study of health outcomes of patients who received SCPs Same study as this one, but with admins NOT from CoC-accredited institutions SCPs for metastatic patients?

References 1. CDC. (2015). Centers for Disease Control and Prevention: Leading Causes of Death. Retrieved from http://www.cdc.gov/nchs/fastats/leading-causes-of-death.htm 2. American Cancer Society. (2015). Cancer Facts & Figures 2016. Retrieved from Atlanta, GA: http://www.cancer.org/acs/groups/content/@research/documents/document/acspc- 047079.pdf 3. Yabroff, K. R., Lund, J., Kepka, D., & Mariotto, A. (2011). Economic Burden of Cancer in the US: Estimates, Projections, and Future Research. Cancer Epidemiology, Biomarkers & Prevention : A Publication of the American Association for Cancer Research, Cosponsored by the American Society of Preventive Oncology, 20(10), 2006 2014. http://doi.org/10.1158/1055-9965.epi-11-0650 4. Hewitt, M., Greenfield, S., & Stovall, E. (2006). From Cancer Patient to Cancer Survivor - Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium (978-0-309-10123-3). Retrieved from Washington, DC: http://www.nap.edu/catalog/11613/fromcancer-patient-to-cancer-survivor---lost-in-transition References 5. DeSantis, C. E., Lin, C. C., Mariotto, A. B., Siegel, R. L., Stein, K. D., Kramer, J. L., Jemal, A. (2014). Cancer treatment and survivorship statistics, 2014. CA: A Cancer Journal For Clinicians, 64(4), 252-271. doi:10.3322/caac.21235 6. Dillman, D. A., Smyth, J. D., & Christian, L. M. (2014). Internet, phone, mail, and mixedmode surveys: the tailored design method: John Wiley & Sons. 7. Greenhalgh, T., Potts, H. W. W., Wong, G., Bark, P., & Swinglehurst, D. (2009). Tensions and paradoxes in electronic patient record research: a systematic literature review using the meta-narrative method. The Milbank Quarterly, 87(4), 729-788. doi:10.1111/j.1468-0009.2009.00578.x 8. O'Brien, M., Stricker, C. T., Foster, J. D., Ness, K., Arlen, A. G., & Schwartz, R. N. (2014). Navigating the seasons of survivorship in community oncology. Clinical Journal Of Oncology Nursing, 18 Suppl, 9-14. doi:10.1188/14.cjon.s1.9-14 Thank you!