Closing the gap: Results from a national survey of breast cancer survivors regarding breast reconstruction options and health education resources

Each year, women with breast cancer (active or post-treatment) are faced with decisions about breast reconstruction. A review of available resources indicates a limited amount of thorough and comprehensive information available on this topic. Guided by Social-Cognitive Theory, the Cancer Support Community (CSC) conducted a national survey of breast cancer survivors to better understand women's information-seeking experiences and knowledge about breast reconstruction options. 840 U.S. female breast cancer survivors (762 eligible for breast reconstruction) participated in the survey online or by paper-and-pencil in 2010. The survey queried participants about their diagnosis, treatment, and experience with reconstruction. In addition, women rated experiences in searching for and receiving information about options and realistic expectations for breast reconstruction. Over 40% reported their healthcare team did not speak with them about reconstruction at diagnosis. Women who received this information reported it to be somewhat (35.1%) or extremely (55.5%) useful. Aside from their healthcare team, 60% of women sought information about reconstruction from other women with breast cancer and 50% from the Internet. Other responses suggest gaps in information with regard to establishing realistic expectations about the procedures and outcomes, providing comprehensive information at various points throughout the process, and across various treatment options. Findings offer a unique insight into the often challenging health information seeking process. Survey results informed the development of a new national education program, Frankly Speaking About Cancer: Spotlight on Breast Reconstruction, which seeks to increase self efficacy through education about and building communications skills in the decision making process.