Abstract
Abstract Background There are 250,000 breast cancer survivors living in the United States today who were diagnosed under the age of 40. Compared to older women, young women (YW) generally face more aggressive cancers, lower survival rates, an increased risk of metastatic recurrence, and a higher rate of anxiety and depression. YW also face unique issues as a result of their diagnosis. They are more likely to be single and dating, starting a career, raising young children, or possibly starting a family. Cancer treatments may impact fertility, cause premature menopause, and sexual dysfunction. Due to these and other concerns, YW diagnosed with breast cancer strongly desire to connect with other young survivors. Young Survival Coalition (YSC) is the premier global organization dedicated to the critical issues unique to YW and breast cancer. It is YSC’s goal to ensure that no young woman goes through breast cancer alone. Methods In order to connect YW diagnosed with breast cancer with others similarly situated, YSC initiated its SurvivorLink program (SL) in 2006 then known as Point of Contact (POC). YW seeking to connect with another young breast cancer survivor called or emailed a YSC staff person, who connected her to a trained POC. POCs received training through 2-day in-person sessions held periodically throughout the country. In 8 years, there were 89 volunteers trained in 7 in-person training sessions. Between 2008 and 2010, 776 YW requested connections through SL. In 2011, usage of SL dropped significantly. In 2013, YSC re-examined the SL program to determine whether it was a needed resource. If so, YSC sought to determine how to revitalize and expand it. Results During the analysis, a few key issues arose. Despite the stated desire of YW to connect with others, SL was not well-utilized from 2011 on. Further research determined that many young survivors were not aware of SL, even if they knew of YSC. The in-person trainings were expensive and not all interested volunteers were located in the same geographic area. This limited the ability to maintain a pool of fresh volunteers with diverse experiences. Data on the program had not been maintained in one central location. It was difficult to discern who was matched through SL, when, and the result of their interaction. YSC believes that the program is important to continue. While other organizations offer call-in support or peer matching, none focus solely on YW with breast cancer nor have a diversity of YW with different diagnoses and experiences who could serve as potential matches. Taking these issues into consideration, YSC took steps to bring renewed energy to this program. First, an online training portal for SL volunteers was developed. Through eight on-line modules, YSC can train more volunteers in a shorter period of time for less cost. Individuals can complete the training in their own time from the comfort of their own homes. In order to make YW aware of the program, SL is now regularly advertised on Facebook, the YSC homepage, and elsewhere. Finally, a central database was initiated to capture information on our trained volunteers, those who call-in, the matches made and the results of their interaction. This allows YSC to track the use and success of the program. Citation Format: Jean Rowe, Michelle Esser, Megan McCann, Stacy Lewis. SurvivorLink: Evolution of 1:1 peer support to connect young women with breast cancer [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P5-15-21.
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