Patient informational needs about breast reconstruction post-mastectomy.

88 Background: For many women, receiving a breast cancer diagnosis is further complicated by decisions they will face about breast reconstruction post-mastectomy. While women are typically provided with some information about reconstruction options, little is known about the perceived value of this information and how it might ultimately affect their decision about reconstruction. The Cancer Support Community investigated these questions in a national sample of women with breast cancer to better understand their information-seeking experiences, knowledge, and decision-making about reconstruction. Methods: In 2011, 439 participants attending Frankly Speaking about Cancer: Spotlight on Breast Reconstruction, a national educational workshop, completed a post-workshop survey (56.4% response rate). 76.2% of respondents were women diagnosed with breast cancer, who reported their decisions about reconstruction as well as their experience receiving information about reconstruction. Results: Respondents were Caucasian (74.8%), black (11.4%), and Hispanic (10.1%), and the mean age was 48.9. Nearly half (42%) of respondents reported low levels of knowledge about breast reconstruction prior to the workshop. Of those eligible for breast reconstruction, 18.2% reported they had decided against reconstruction, 40.7% were considering their options, and 41.1% planned to undergo or had undergone reconstructive procedures. Women reported they would have liked to have had more information prior to reconstruction about a variety of topics, including more information about the procedure (43.6%), how they would look (31.1%) and feel (29.7%) after reconstruction, and information about their future breast health (31.8%). No differences were found in unmet informational needs based on their reconstruction decisional status with one exception: those who decided against reconstruction were more likely to endorse that they would have wanted more information about when to make their decision about reconstruction than the other two groups (chi square=24.6, p <.01). Conclusions: Findings suggest women facing breast reconstruction often are not equipped with comprehensive information about procedures, options, outcomes, and recovery.