Abstract P6-09-10: Informational needs among women considering breast reconstruction post-mastectomy.
Authors: Ahmed I , Harvey A , Amsellem M 
Published: August 2014

Abstract
For many women, the complexity of processing and learning about their breast cancer diagnosis is further complicated by decisions to be made about breast reconstruction post-mastectomy. For women considering reconstruction post-mastectomy, obtaining information about reconstruction procedures and outcomes is a process, and multiple factors may influence the decision-making process. Little is known about the extent to which patient's knowledge and expectations related to breast reconstruction procedures weigh on their decision-making process.
To better understand and meet the needs of women facing reconstruction, the Cancer Support Community surveyed 1,185 women diagnosed with breast cancer. Women answered questions either: online (n = 840) in August, 2010; or via paper and pencil (n = 345) after attending a breast reconstruction workshop held at multiple sites nationwide in 2011. In addition to demographics, and diagnostic and treatment history, women reported their decision regarding reconstruction, experience searching for and receiving information, and expectations about reconstruction.
Respondents were primarily Caucasian (81.9%), and the mean age at diagnosis was 48.9. 21.2% of respondents were first diagnosed with breast cancer in the past year, and 30.0% were diagnosed at least five years ago. Online respondents were more likely to be Caucasian, less likely to have been recently (less than one year) diagnosed with breast cancer, and more likely to have already made a decision regarding reconstruction, as compared to workshop attendees, but were similar in all other respects for these analyses.
Most respondents (57.3%) had either undergone or had decided to undergo breast reconstruction. 18.4% of respondents reported they decided not to undergo reconstruction, and 8.9% reported they were not eligible. Additionally, 15.5% of respondents were currently considering or planning to consider their options for reconstruction at a later time.
Of the women who were currently considering or planning to consider breast reconstruction, information-seeking patterns and informational needs were reported. Aside from their health care team, most women sought additional information about reconstruction from other women with breast cancer (40.9%), medical literature (46.0%), patient support groups (35.6%), friends and family (41.3%), and the Internet (57.2%). Over one-third of respondents considering reconstruction (34.5%) would have liked to have had more information about the risks and benefits of reconstruction at the time of mastectomy versus at a later time. These women also reported a number of factors influencing their current point in the decision-making process, including: concerns about implant safety (83.3%); concerns about additional treatment and recovery (85.5%); concerns about failed procedures (91.5%); and confusion about the reconstruction decision-making process (72.2%).
Survey responses suggest women considering breast reconstruction have a variety of informational needs, some of which are not being met. Results suggest there is still work to be done with regard to establishing realistic expectations about the procedures and outcomes, providing comprehensive information at various stages throughout the process, and across the various choices.
Citation Information: Cancer Res 2012;72(24 Suppl):Abstract nr P6-09-10.