Improving Breast Density Communication: Does the Provision of Complex Health Information Online Work?

Breast density (BD) is one of a number of independent risk factors for breast cancer. ¹ Approximately 40%–50% of women in the breast screening population in the United States are estimated to have dense breasts, ² making it one of the most common risk factors for breast cancer. Apart from this, having dense breasts has also been shown to increase a woman's risk of having an interval cancer diagnosed ³ due to lower sensitivity of mammography in women with dense breast tissue at mammography screening. ⁴ As a result of a largely grass-roots effort, the majority of U.S. states have now enacted laws mandating language in mammography reports, which notifies women if they have dense breasts and informs them of the risks related to dense breast tissue. ^5,6 However, effecting BD notification has not been straightforward, and has highlighted challenges related to how best to communicate density information and to guide women toward the appropriate management strategy.

Since BD notification was enacted and the complex concept of BD became more widespread among consumers and health care providers, BD understanding and knowledge have been consistently shown to be low and variable. ^7,8 Furthermore, although the aim of BD legislation is to help women make informed decisions about their breast health, several controversies exist around whether and how best to notify and discuss BD, and hence there is no international consensus on BD notification. First, a focus on BD notification may not take into consideration other important risk factors for breast cancer, such as postmenopausal obesity, that carry a similar risk for breast cancer. ⁹ Second, notifying and discussing BD with women may contribute to an increase in women's anxiety and concern about what they can do with information since BD is a relatively nonmodifiable risk factor, and management of BD notification increases supplemental screening using ultrasound and MRI. ¹⁰ The benefit that these supplemental screening modalities has on breast cancer mortality is not currently clear ^{11 –13} and may ultimately not outweigh the associated trade-offs for individual women, including false-positive results.

There have been several studies that have aimed at understanding the impact of BD notification and legislation. ^7,8,14 As the complexities around BD notification may not necessarily be solved simply by providing more information to individual women and health care providers, ¹⁵ studies on how women respond to BD information and how best to communicate it are of the upmost importance. To date, there has been a small number of interventions ^{16 –18} that have focused on improving BD communication between women and health care providers using additional written or video-based information; however, there is still limited evidence to help inform clinical practice and policy. In today's digital age there has also been limited previous adequate testing of online BD information. So, what could be the best and most accessible way to begin to communicate this information to women?

According to Bowles et al. in this issue of the Journal of Women's Health, ¹⁹ providing BD information alongside personalized breast cancer risk information to women using a web-based intervention may not be the answer. In this well-designed online randomized trial, women aged 40–69 years with a recent normal screening mammogram from Washington State-where BD legislation had not been enacted at the time of study recruitment-were randomized to a website that included information about BD along with information on breast cancer risk, chemoprevention, and magnetic resonance imaging. The women then self-reported communication about BD with their health care providers at 6 weeks and 12 months. The study found that the website promoted ongoing conversations in high-risk women about BD; however, it did not promote BD discussions between women and their health care providers if they had not had these discussions previously. The authors conclude that such an intervention is unlikely to be successfully used clinically to motivate BD discussions in women who had not already engaged in BD conversations.

This important finding from this online randomized trial could have been influenced by the other risk information provided to women alongside BD information. Since the intervention was not solely designed to focus on BD information, ²⁰ women who were unfamiliar with BD or have not had previous discussions about the implications of BD with a health care provider may not have focused on this content of the intervention as much as those who had previously heard of BD and had BD-related discussions. Although further trials are needed in more diverse study populations to confirm (or refute) the findings of Bowles et al., in an era of informed decision-making in health care, this study begins to shed light on the importance of face-to-face or more direct conversations between women and health care providers. This is principally important when initially discussing unfamiliar and complicated topics such as BD, and more so if BD is to be embedded in the broader context of breast cancer risk discussions.

While this study adds to the body of work attempting to better understand the overall impact that BD notification and legislation has on women, and how best we might communicate this information to women, it seems that the jury is still out. Developing appropriate strategies to effectively communicate BD information to women, including both potential benefits and harms of density-related intervention, is still needed. Future studies, particularly those that test BD communication in randomized trials, can shed evidence that informs practice in the United States and potentially in worldwide breast screening programs currently grappling with decisions regarding BD communication.