Interactive tool clarifies breast density risks without causing ‘undue anxiety’ after mammogram
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Dense breast tissue is a common phenomenon, apparent in half of women who undergo screening mammography.
Most states require that mammogram reports include information for women on breast density, which has been associated with increased risk for breast cancer and can compromise the diagnostic accuracy of a mammogram.
However, researchers have found these notifications, required in 38 states, do not adequately improve women’s understanding of the risks associated with dense breasts.
“Every state letter is a little bit different, but from prior work and from this study, we’ve found that the letters don’t really define what breast density means for these women,” Christine Gunn, PhD, assistant professor of medicine at Boston University School of Medicine, said in an interview with Healio. “They tell women that they have dense breasts, but it’s hard for women to make sense of what they should do, or what this means for their health and future mammograms.”
Results of a study by Kyanko and colleagues, published in Journal of General Internal Medicine, showed that among 1,928 women across the United States who had at least one screening mammogram, women in states that required dense breast notifications appeared more likely to report higher breast density than those in states without such a requirement (43.6% vs. 32.7%; adjusted OR = 1.7; 95% CI, 1.34-2.17). However, only 23% of women overall understood that greater density increased breast cancer risk, and researchers observed no difference between the groups in breast cancer-associated anxiety.
To address this lack of understanding, Gunn and colleagues at Boston University School of Medicine developed and evaluated an interactive, animated smartphone app that informs women about breast density. The researchers designed and tested the technology in collaboration with the Pink and Black Education Support Network, a breast cancer advocacy group based in Boston.
Gunn spoke with Healio about the importance of breast density awareness and the promising results achieved in a mixed-method pilot study of the interactive health counselor.
Question: What is it about breast density notifications that makes them difficult for women to understand?
Answer: Several studies have shown this. In a study published a few years ago, some colleagues and I looked at the readability of notification letters in different states and found they often are written at a 10th- or 11th-grade reading level. Most recommendations ideally are written at a fifth- or sixth-grade level, with an eighth-grade level considered acceptable. So, the notifications are often written at a higher level than most women can understand. We’ve done some qualitative work in which we interviewed both English and Spanish speakers after they received a notification. These women talked about the medical jargon and the lack of specific descriptions, which led them to feel confused.
Q: How would the interactive counseling tool work?
A: This interactive tool could guide women through the mammogram process, which is especially helpful to women who never had a mammogram before. It could tell them what they should expect when they show up for their appointment, and what it will be like. When the patient gets the results, the counselor would be able to release specific information based on those results. It might then prompt the patient to interact and ask questions about the breast density piece. If they were called back for an abnormal finding, it would explain their results in understandable language. So, it’s not just about breast density, but also to guide women through the whole process.
Q: How well did this interactive tool perform with patients?
A: Acceptability was quite high, and 81% were somewhat or very satisfied with it. We also saw increases in knowledge around some concepts related to breast density, which is encouraging. There were other things people still had questions about, and we will continue to work on those. This was our first test of this, so we will continue to refine what we’ve already developed to make it more responsive to women’s needs.
Q: What would the interactive tool advise women with dense breasts to do?
A: Breast density is one of many risk factors for breast cancer. So, simply having dense breasts doesn’t necessarily mean the patient needs additional tests. Most of the recommendations state that women with dense breasts should talk to their doctors about overall breast cancer risks, and doctors should help patients learn more about their specific risks. If the risk for developing breast cancer is high enough after considering all risk factors, additional testing may be warranted. The patient may be advised to have a different type of breast cancer screening test, such as an MRI.
The idea behind creating an interactive counselor is that it can be more personalized to a woman’s situation. Also, interactive agents can build self-efficacy and provide more emotional support, rather than just dispensing information.
This module provides encouragement. It allows patients to ask questions, and it will ask the patient, “how are you doing today?” It builds a bit of rapport, which can be extended over the course of the screening process.
The results of mammograms can create a lot of anxiety for women. This tool can provide information and support so women can complete their screenings and understand their results without undue anxiety. – by Jennifer Byrne
References:
Gunn C, et al. J Gen Intern Med. 2020;doi:10.1007/s11606-019-05622-2.
Kyanko KA, et al. J Gen Intern Med. 2020;doi:10.1007/s11606-019-05590-7.
For more information:
Christine Gunn, PhD, can be reached at Boston University School of Medicine, 801 Massachusetts Ave., First floor, Women’s Health Unit, Boston, MA 02118; email: christine.gunn@bmc.org.
Disclosures: Gunn reports no relevant financial disclosures.