Abstract
With the hope of increasing earlier detection of breast cancer (BC) among women with dense breasts, the first legislation requiring notification of women about their breast density after a mammogram was enacted in 2009. A decade later, >30 states and the federal government have passed such legislation. The goals of dense breast notification (DBN) legislation are to increase [women's] awareness of breast density as an independent risk factor for BC, of its masking effect on mammograms, and to prompt discussions and shared decision-making about supplemental screening with health care providers, based on individual risk factors. Ultimately, the goal is to ensure that high-risk women obtain appropriate additional more sensitive screening for early detection.
DBNs vary in wording, content, and targeted audience, and the processes for implementation differ by state. Implementation of DBN legislation significantly increases the probability of supplemental ultrasound screening, 1 and when the wording of DBNs includes specific language about the possible benefits of supplemental screening, its use increases, and slightly more breast cancers are detected, relative to states with no DBN laws, 2 although it is not known whether this increased detection decreases mortality.
There is widespread discordance between states' DBN literacy levels and corresponding basic literacy levels. The generally poor readability of the current DBNs, and incompatibility with documented literacy of the general population, raises concerns about the interpretation of these notifications by the women who receive them, and the potential for DBNs to exacerbate existing disparities in BC screening and outcomes. 3
Ideally, use of supplemental screening to detect BC follows a personalized risk assessment and shared decision-making between an individual woman and her care provider. As the goal of DBN legislation is to create an activated patient who requests individualized risk assessment and discussion with a provider about the advantages of supplemental screening based on risk, clinicians are the fulcrum on which the effects of the legislation rest. Therefore, it is critical that physicians and other clinicians involved in BC screening have sufficient knowledge about breast density, coupled with sound clinical practices that appropriately incorporate the risks of breast density into recommended care.
In this issue, Brown and colleagues 4 assessed clinicians' views about breast density and their practices for BC screening finding that nearly half of the clinicians surveyed were unaware of breast density notification laws. Perhaps more concerning was the finding that nearly two-thirds were unaware of the increased risk of BC among women with dense breasts. Primary care providers were less aware of the law and the increased BC risk, compared with specialists. Only a quarter of clinicians surveyed indicated that they often or always discuss breast density with patients, and two-thirds of the clinicians wanted more education on this topic. In response to a hypothetical case scenario, clinicians were less likely to say they would order supplemental screening for patients with the greatest known risk (extremely dense breasts), than among women with heterogeneously dense breasts, illustrating clinicians' uncertainty about appropriate care.
Echoing Brown's findings, data from Massachusetts showed that when prompted to identify supplemental screening tests which evidence suggests may be warranted for women with dense breasts, only 27% correctly indicated that neither ultrasound, MRI, tomosynthesis, nor genetic testing are evidence-based recommendations. 5 In addition, few providers perceived the legislation to promote informed decision-making (23%).
Together, the data to date show that clinicians are not well prepared to respond to women's queries about the risks of dense breasts, or to help women make informed decisions about supplemental screening, nor do they necessarily feel it is their role to do so, despite DBNs prompting women patients to engage with their clinicians in this way. As Brown and colleagues rightly point out, the limited evidence base and lack of consensus guidelines for care of women with dense breasts are reflected in the findings of variations in responses to the hypothetical case. 4 A related issue is that educational programs and materials are needed to foster increased provider knowledge about appropriate care and screening for patients with dense breasts; such programs are now becoming available. 6
Brown and colleagues' findings support the notion that there are significant impediments to the breast density notification laws' ability to reach their goals. Even if DBNs do heighten women's awareness of breast density and prompt discussions with care providers, Brown's data show that many clinicians do not have sufficient knowledge or preparation to have these discussions with women, or to know what supplemental screening to recommend (if any).
The majority of providers in Brown and colleagues' convenience sample were based in New York, limiting the study's generalizability. Yet, New York introduced breast density legislation in 2013, so the fact that provider knowledge remained significantly limited 3 years later highlights the limited reach of the legislation and suggests that more needs to be done to achieve the goals of heightening provider awareness of the risks of breast density, and their capacity to knowledgeably counsel patients about individual risks and the value of supplemental screening, based upon such risks.
In addition, there is a great need to understand patients' reactions to the notifications, as these, in turn, will affect the counseling clinicians will need to provide. At a single site in Massachusetts, patients who recalled the notification expressed a lack of understanding about breast density as a concept, and many created their own interpretations about what “caused” their dense breasts. Although the DBN sent to women stated that breast density can increase BC risk, just 10% of women recalled this point. Many felt confused, suggesting the notification was vague, they were not provided enough information, and were unsure about what to do. About a third of women sought in-person communication with their physicians to get an explanation. Women had to balance the DBN's message with information from medical professionals telling them they were fine—information that was perceived to be conflicting, and led to uncertainty about the impact of dense breasts on their health. 7
In a further qualitative study of 19 Spanish speakers, 9 reported not receiving the notification in their native language, and not having previous knowledge of breast density combined with receiving English notifications contributed to confusion and inaccurate interpretations of key messages. 8 More needs to be learned about women's responses and reactions to DBNs, and their plans for talking with their doctors and/or pursuing supplemental screening.
In summary, Brown and colleagues' findings illustrate the significant disconnect between the ideals of DBN legislation and the preparation of clinicians to respond. Without a solid evidence base and sufficiently educated clinicians who are prepared (and willing) to counsel about breast density, such legislation cannot achieve its goals.