Dense breast notifications defy comprehension for many patients

A review of existing state laws on dense breast notifications has turned up an overall tin-eared response to patients’ needs, with many notifications deemed hard to read, difficult to understand and out of tune with individual states’ average literacy levels.

These sorts of stumbles may hinder women trying to make good decisions about supplemental screening, and they likely contribute to a widening of disparities in breast cancer screening related to low health literacy.

Nancy Kressin, PhD, and colleagues at Boston University surmised as much after analyzing the 24 states other than Delaware that had laws requiring dense breast notifications (DBNs) as of the first of the year. They excepted Delaware due to insufficient detail in that state’s language, and other states have gotten on board since Jan. 1.

Among their key findings, published April 26 in JAMA:

• Flesch-Kincaid readability levels ranged from grades 7 to 19.4 (mean, 11.1), most exceeding the recommended readability level (grades 7-8), and the authors point out that about 20 percent of the population reads below a grade 5 level.
• On understandability, all DBNs scored poorly (11 percent to 33 percent) as measured by HHS’s Patient Education Materials Assessment Tool (PEMAT).
• Only three states’ DBN readability level was at the grade 8 level or below, and some of the highest readability levels occurred in states with the lowest literacy levels.

Kressin and co-authors further found that all DBNs mention masking bias, most mention the association with increased cancer risk (74 percent; n = 17) and most mention supplemental screening as an option, advising women to consult their physician (65 percent; n = 15).

They note that the lack of evidence regarding supplemental screening may contribute to variation in DBN content and to physician difficulty explaining results and conducting personalized risk assessments.

Acknowledging that their analysis was limited by its focus on DBN text, with no data on relevant outcomes—anxiety, supplemental screening usage, additional cancers detected—Kressin et al. conclude that future DBN efforts “should focus on enhancing the understandability of DBNs so that all women are clearly and accurately informed about their density status, its effect on their breast cancer risk, and the harms and benefits of supplemental screening.”