Education About Breast Density Does Not Improve Screening Adherence Among Racial and Ethnic Minority Women

Breast density continues to be a topic of international discussion due to high density being an independent risk factor for breast cancer ¹ with a masking effect on mammography, ^2,3 coupled with the high proportion of women in the breast screening population who have dense breasts. ⁴ One of the key drivers for notifying women about their breast density has been to empower them to become informed and more involved in future and additional screening in order to manage their breast cancer risk. The United States Food and Drug Administration’s (FDA) final rule on notifying women attending mammography services of their breast density when they have a mammogram is now enacted. ^5,6 However, over the last few years, there has been increasing concern that these breast density notification laws may further disadvantage racial and ethnic minority women, ^7,8 with calls to ensure equitable outcomes. While the FDA rule includes guidance on specific information to include in the patient lay summaries, this information also includes the potential for additional screening for those with dense breasts despite nonconsensus on clear and equitable clinical pathways, ⁹ and it is not clear that the FDA has tested the information with women from different cultural and linguistic groups. Moreover, the FDA has not prepared the notification in languages other than English, leaving it up to the discretion of each individual screening provider or program to do so.

In addition to uncertainty about whether the benefits of breast density notification outweigh potential harms for women, ^10,11 evidence has demonstrated inequities that exist around awareness and knowledge, and access to health professional and additional screening. ¹² But is tailored breast density information and/or education really the answer to overcoming all of the underlying barriers that exist for racial and ethnic minority women in relation to notification? In this issue of The Journal of Women’s Health, Austin et al. ¹³ found that education interventions targeting breast density alone are unlikely to improve adherence to subsequent mammography screening among Latina women. In this 3-arm randomized controlled trial (RCT), 946 Spanish-speaking women aged 40 years or older attending for screening at a U.S. Federally Qualified Health Center were randomized to usual care (a standard mailed breast density notification letter), enhanced care (standard notification letter + an educational brochure on breast density), or interpersonal care (standard notification letter + educational brochure + telephone-based community health worker, also known as a Promotora). Previous findings ¹⁴ from the short-term effect of these education interventions on breast density knowledge reported that both the enhanced care and the interpersonal care increased women’s knowledge, with interpersonal education further promoting discussion with providers. Yet, as reported by Austin et al., ¹³ findings from the same cohort of women did not reveal significant differences in adherence to subsequent mammography screening between 10- and 26-months post-baseline across all three educational approaches regardless of the breast density status. Latina women in the intervention groups therefore had more knowledge about breast density, but this did not translate into increased uptake of mammography screening. The authors concluded by suggesting that breast density education interventions alone may not be adequate to achieve the desired effects of notification in this cohort, including future repeat mammography screening.

Although the landscape of breast density notification may have changed since data from this RCT was collected, the findings from the study still provide important insights and highlight some of the ongoing underlying barriers that Latina and other racial and ethnic minority women face in relation to breast cancer screening more generally. In this RCT, ¹³ women who had previous mammograms and had higher self-efficacy were significantly more likely to have subsequent adherence. Simply put, those who are engaged with and confident about breast cancer screening will continue to screen and those who aren’t will likely continue to face existing barriers, despite specific additional information and education about the risk of breast density. While similar findings on adherence to breast cancer screening have been shown in racial and ethnic minorities, ^15,16 it is the first time this has been shown in relation to the effectiveness of varying breast density educational interventions.

A shift toward risk-based breast cancer screening seems inevitable, with breast density being the risk factor of focus with widespread availability of its assessment during mammography screening. Therefore, in light of these findings, ¹³ the value of the provision of additional breast density information and/or breast density-specific education alone should be further considered. Will a blanket national rule such as the one now implemented in the United States, ⁶ which also has implications for international breast screening practice, be enough to achieve the goal to inform women and prompt them to consider future and additional screening to reduce their risk? And will information and/or education in addition to notifications actually improve outcomes for racial and ethnic minority women, despite the lack of consensus on clinical pathways for women with dense breasts? Or do health systems need to consider broader transformations to remove systemic discrimination and genuinely tackle the inequalities that currently exist?

It is clear from this RCT that to help overcome barriers facing racial and ethnic minority women, interventions other than information and education alone are needed, whether it is breast density or even more comprehensive risk information, better interventions are needed to engage and enable these women. And while these should be further examined in the U.S. context, in other jurisdictions currently contemplating similar laws and policies around breast density notification, findings from this RCT should be taken into consideration to inform how best to notify women. This may pave the way toward ensuring equity (and avoiding widening inequity) in breast density notification moving forward for all women.