Perception of Breast Density Information Among Women in Miami, FL: a Qualitative Study

The US Food and Drug Administration has proposed requiring that all women undergoing mammography receive written information about their breast density. Past research suggests many women may misperceive the meaning of breast density. Additionally, women with dense breasts may not understand the risks and benefits of pursuing additional imaging studies. The goal of this study was to explore women's beliefs about breast density and their preferences for how this information is conveyed. Women with increased breast density detected on mammography at a university-based breast imaging center in South Florida were recruited for a series of focus groups. Twenty-five women participated, ranging in age from 42 to 65 years. Nine women (36%) self-identified as Hispanic/Latina, eight (32%) as Black, four (16%) as White, three (12%) as Asian, and one as "other." Four focus groups were conducted in English and one in Spanish by professional moderators using a semi-structured format. A constant comparative method was used to identify common themes using a general inductive approach. Areas explored included understanding of the term breast density; personal reaction to being informed of dense breasts; questions about breast density; understanding of supplemental screening; and preferences for how to convey breast density information. Subthemes identified included a misperception that breast density is palpable; a feeling of fear on learning of increased breast density results; a concern about what causes increased breast density and whether it can be reversed; a desire to proceed with supplemental ultrasound imaging; and a preference for simple messages explaining the concept of breast density in multiple formats including video. Participants voiced the incorrect belief that caffeine intake could increase breast density and stated that they wanted to know specific details about their personal results. There is a need for better tools to communicate breast density in a way that allays anxiety while enabling women to make fully informed decisions about their breast health. Clinicians and cancer educators should be aware of misperceptions women may have about breast density. Policymakers should keep in mind potential public confusion about this complex topic when crafting density notification rules.