Patient experience with survivorship care plans: Findings from an online registry of breast cancer survivors.

Abstract

9136 Background: The IOM (2005) recognized that survivorship care plans (SCP) and treatment summaries (TS) are critical to the delivery of comprehensive survivorship care. The plans are intended to integrate primary and follow-up cancer care, understanding patients are mobile across healthcare systems. These recommendations present a significant challenge to oncology practices; yet, little is known about their use and value to patients. The Cancer Support Community, the largest provider of psychosocial support to cancer patients in the US, surveyed breast cancer survivors about their experience with SCPs to identify areas of unmet need. Methods: To date nearly 3,000 breast cancer survivors have joined the Breast Cancer M.A.P. (Mind Affects the Physical) Project, an online registry designed to examine the psychosocial impact of breast cancer. In November 2010,844 consecutive registrants were provided study-specific questions: 1) receipt of a SCP or TS, 2) if received, satisfaction with SCPs, and 3) queries about information desired but not provided. This sample was 99% female, 88% Caucasian, and the mean age was 55. 72% had at least a college degree. The majority (58%) was initially diagnosed with at least Stage II disease; 14% reported having had a recurrence. Results: Of the respondents, only 12% of breast cancer survivors had received a treatment summary (n=101) and 10.5% had received a survivorship care plan (n=90). Of those who received a SCP, 53% found it to be useful or very useful. Among registrants who received a SCP, 25% reported that information about test results, dates of treatment, and information about future tests were missing from their SCP. Registrants would have also liked their SCP to include information about: 1) general survivorship resources, 2) complementary and alternative treatments, 3) recurrence, 4) late effects, and a summary of the diagnosis and prognosis. Conclusions: The data from the MAP Project indicate that the majority of breast cancer survivors did not receive a survivorship care plan and of those who did receive a plan, a substantial proportion did not find it useful. There continues to be gaps in the adoption, delivery, and utility of cancer survivorship plans.