Measuring knowledge gained for young breast cancer survivors and co-survivors.

Abstract

213 Background: Cancer impacts not just the survivor, but those caring for her. Young Survival Coalition (YSC) is the premier global organization dedicated to critical issues in young breast cancer survivors (YBCS) and co-survivors. In 2015, targeted programming was introduced at YSC’s Northeast Regional Symposium. Prior to the event, YSC crafted pre- and post-surveys to measure knowledge gained through the Symposium as an intervention for YBCS and co-survivors. Methods: YSC disseminated pre- and post-event evaluations via online surveys. The pre-survey was sent to registrants (240; 75 completed), and the post-survey was sent to attendees (178; 99 completed). The surveys were designed to measure baseline and increased knowledge in the 4 areas presented at the Symposium: Sex and Intimacy (S&I), Practical Matters (PM), Resiliency and Communication. Questions included demographics, diagnosis, identification as YBCS/co-survivor and baseline knowledge in the 4 areas. Questions in the post-survey followed the same format and measured knowledge gained from the Symposium. Results: In pre-survey data, YBCS and co-survivors most wanted knowledge and resources in S&I and PM. Seventy-five percent reported S&I as a challenge since diagnosis, and 51% stated communication in relationships was difficult. Twenty-two percent felt they did not have the resources they needed to address PM, while 20% felt unsure about what resources they needed. Following the Symposium, 74% felt that they had tools and resources to help in their everyday life as it relates to S&I after the Symposium. Sixty-seven percent reported gaining knowledge they did not have prior to attending. S&I as it relates to YBCS (partnered or single) and rebuilding self-confidence were areas where more information was desired. Seventy-five percent indicated they received information on PM of which they were unaware prior to attending. Follow-up care, financial concerns and career were areas where more information was desired. Conclusions: YBCS and their co-survivors are in need of support and information that is targeted and easily accessible. YSC will continue crafting specific programming for YBCS and co-survivors and measuring the knowledge of both to stay current with their needs.