Background Qualitative studies have identified barriers to communication and informed decision making among breast cancer survivors making treatment decisions. The prevalence of these barriers is unknown.
Objective To quantify the need for decision support among breast cancer survivors.
Methods We surveyed 2,521 breast cancer survivors participating in an online registry hosted by the Cancer Support Community to find out what proportion of breast cancer patients: made decisions during their first visit with a specialist; received satisfactory information before that visit; asked questions and received responses; and endorsed expanded use of decision support.
Results We received 1,017 (41%) responses and analyzed 917 surveys from women who lived in the United States. Most of the respondents recalled making treatment decisions during their first visit (52%). A minority (14%) received information before the first specialist visit. At least 25% of respondents rated their satisfaction below 7 on a scale of 10 for decision-making, information, and questions asked and answered. Respondents endorsed the need for assistance with obtaining information, listing questions, taking notes, and making audio-recordings of visits.
Limitations The respondent sample skewed younger and had higher-stage cancer compared with all breast cancer survivors. Responses were subject to recall bias.
Conclusions Cancer survivors expressed gaps in their care with respect to reviewing information, asking questions, obtaining answers, and making decisions. Implementing decision and communication aids immediately upon diagnosis, when treatment decisions are being made, would address these gaps.
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