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Research indicates breast density laws aren't working well, and online patient education resources likely aren't helping.
Questions about how to best implement breast density notification laws – and their overall efficacy – have been swirling over the past few years. What do women need to know, what’s the best mechanism for informing them, and what language should be used?
To date, only 38 states have breast density notification laws, and they are all different. That means women nationwide aren’t receiving the same information in a uniform way. This variation resulted in several recent investigations, analyzing whether this type of legislation is effective.
Research Shows a Lack of Efficacy
A study published in the Jan. 8 Journal of General Internal Medicine revealed the laws and the notification letters are falling short of their intent to increase women’s understanding of why breast density is important in catching and combatting breast cancer.
In a survey of nearly 2,000 women, investigators evaluated a woman’s reported history of increased breast density, her knowledge of the increased breast cancer risk accompanying dense breasts, her understanding of how dense breasts can hide cancers on mammography, and her anxieties over the disease.
According to results, dense breast notification laws did succeed in helping some women understand they have dense breasts. The impact was seen most among women who post-high school education.
However, they didn’t improve women’s understanding of the dense breast-breast cancer link or that dense breasts reduce mammography’s detection capability. In fact, among participants, only 23 percent of women located in both states with and without dense breast notification legislation reported understanding that increased breast density is associated with a higher risk of breast cancer. Sixty-eight percent understood the dense-breast effect on mammograms.
Investigators pointed to the disparity in education as a potential culprit for the limited impact of notification legislation.
“We know that women with less education are less likely to receive high-quality breast cancer screening and treatment,” said senior author Cary Gross, M.D., a Yale University professor of medicine and member of the Yale Cancer Center, in a press release. “Our study underscores one potential mechanism for this disparity. Ensuring that notifications are written in simple language may help improve understanding of breast density for all women.”
Additional research also points to another contributing factor. In a recently published study in Academic Radiology, investigators report that online patient education material focused on breast density is largely written at a level too difficult for more patients to fully comprehend and process.
The American Medical Association currently recommends patient education materials be written at a 6th-grade reading level. But, this study of 41 websites dedicated to providing patient-focused, breast-density information – including academic, non-profit, commercial, and government sources – identified the sites were written at levels ranging from an 8th-grade to advanced-college. Eleventh grade was the average level. Nearly half included diagrams, and very few offered video content to aid in explanations.
The result, researchers wrote, is that patients aren’t able to find resources online to help them further understand any breast density notifications.
“Readability of currently available online patient-education materials on breast density may be written at a level too difficult for the general public to comprehend, which may represent a barrier to educational goals of newly passed federal breast density legislation,” they wrote.
A Different Patient Path to Information
JoAnn Pushkin, executive director of patient information website DenseBreast-info.org, disagreed. Instead, she said, the researchers reviewed sources that weren’t created with patients in mind.
“While the challenge of balancing patient readability with the necessity of including medical terminology is one which we appreciate,” Pushkin said, “the study included and analyzed content from industry publications and manufacturer content which was not necessarily developed for a patient audience.”
The conundrum surrounding the efficacy of these patient education websites likely centers on the vernacular researchers used when evaluating resources. Instead of the term “breast density,” which investigators used to select sites, she said, patient notification letters include the terms “dense breasts” or “dense breast tissue.” Consequently, women could be searching for and accessing breast density information differently.
Ultimately, though, she said, patients and providers should not rely solely on online materials and notificaiton letters to ensure women fully understand the risks associated with having dense breasts. They are only part of the solution to educating women about breast density.
“While inform laws were intended to raise a woman’s awareness about dense breasts, they were not intended to be a substitute for a conversation with her provider,” Pushkin said. “They do, though, result in a need for medically sources, patient-friendly resources to educate and inform that patient/provider conversation.”