Breast density notifications leave many women in the dark, survey results suggest
Letters notifying women of their breast density after mammographic screening miss the mark when it comes to health education, new survey results suggest.
Women with dense breasts have an increased risk of developing breast cancer during their lifetime and these findings can also mask suspicious lesions on mammograms, making it difficult for radiologists to detect some cancers. For this reason, many states have laws in place that require institutions to notify women of their breast density via written communication. While these materials are meant to inform women on the unique risks of having dense breasts, research indicates that the notifications might be leaving some in the dark.
“These notifications were developed with limited input and without extensive testing among women in the general population, and many are written at a high literacy level, often discordant with population literacy levels,” corresponding author Nancy R. Kressin, with the Department of Medicine at Boston University School of Medicine, and co-authors wrote. “Prior studies of women’s knowledge from and reactions to DBNs demonstrated racial/ethnic disparities. Low awareness of breast density, especially among racial/ethnic minority and socioeconomically disadvantaged women, supports the need for input from varied population groups.”
To better understand preferences pertaining to breast density communication, researchers at Boston University School of Medicine conducted a national telephone survey with 2,306 racially/ethnically and literacy diverse women, 61 of whom also participated in in-depth qualitative interviews.
They found that most women (80%) preferred learning about their breast density and accompanying risks from providers, rather than letters. These findings were more prevalent among Non-Hispanic Black women (85%) compared to Non-Hispanic White (80%) and Asian women (72%). The opposite was true for women with low literacy, who preferred written notification over personal communication. Women with high literacy most often favored learning of their results via an online portal.
The researchers noted that women with low literacy or those who do not speak English as a first language might prefer having written notifications as back up if they are unable to process verbal communications confidently.
“The explanations women provided helped clarify that written information gives them an opportunity to look up the definitions of words they do not understand, to reread the information, and to take time to process it,” the authors explained.
In the interviews, many women described the notifications as impersonal, confusing and sometimes concerning. Many cited wanting to speak with a doctor about what high breast density meant for their health, but that they understood providers are “overworked and overwhelmed.”
“A multi-modal notification (e.g., a letter accompanied by an educational brochure or links to online information including visuals), and provision of opportunities to speak with a clinician to ask questions and receive personalized information and guidance, would meet more women’s needs than the single-mode DBN letters currently in use,” the experts concluded.
The entire study can be viewed in the journal, Patient Education and Counseling.
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In addition to her background in journalism, Hannah also has patient-facing experience in clinical settings, having spent more than 12 years working as a registered rad tech. She began covering the medical imaging industry for Innovate Healthcare in 2021.