Women's Understandings and Misunderstandings of Breast Density and Related Concepts: A Mixed Methods Study

Most U.S. states require written notification of breast density after mammograms, yet effects of notifications on knowledge are mixed. Little is known about potential misunderstandings. We used a sequential mixed-methods study design to assess women's knowledge about breast density, after receiving a notification. We conducted a telephone survey among a racially/ethnically and health-literacy level diverse sample (N = 754) and qualitative interviews with 61 survey respondents. In survey results, 58% of women correctly indicated that breast density is not related to touch, with higher accuracy among non-Hispanic White women and those with greater health literacy. Next, 87% of women recognized that breast density is identified visually via mammogram, with no significant differences in responses by race/ethnicity or health literacy. Most (81%) women recognized that a relationship exists between breast tissue types and density; Non-Hispanic White women were less likely to respond correctly. Only 47% of women correctly indicated that having dense breasts increases one's risk of breast cancer; women with low health literacy were more often correct. Qualitative results revealed additional dimensions of understanding: Some women incorrectly reported that density could be felt, or dense breasts were lumpier, thicker, or more compacted; others identified "dense" tissue as fatty. Interpretations of risk included that breast density was an early form of breast cancer. We found areas of consistent knowledge and identified misperceptions surrounding breast density across race/ethnicity and health literacy levels. Further education to address disparities and correct misunderstandings is essential to promote better knowledge, to foster informed decisions.