Women’s perceptions of dense breast notifications in a Massachusetts safety net hospital: “So what is that supposed to mean?”

Abstract

ObjectiveCurrently, 30 US states mandate that radiologists notify women when dense breast tissue is found on mammography. Little is understood about how notifications are perceived by recipients. This qualitative study sought to understand how dense breast notifications (DBNs) impact women’s perceptions and their participation in follow-up care. MethodsWe assessed rates of DBN recall and conducted semi-structured telephone interviews with 30 English-speaking women ages 40 to 74 after receiving a DBN from a Massachusetts hospital. Content coding characterized women’s recall of the notification content, perceptions of breast density, and planned or actual participation in follow-up care. ResultsMost women (81%) recalled receiving a DBN, but few could recall specific content. Women described struggling to understand the meaning of breast density and created their own explanatory models of dense breasts that differed from medical explanations. Many women planned to or did talk with their doctors about breast density as a result of receiving the notification. ConclusionsWomen receiving DBNs have limited knowledge and many misperceptions about the implications of having dense breasts. Practice implicationsEducational support is needed to promote informed decision- making about breast cancer screening that incorporates personal risk in the setting of dense breast legislation.