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Dense Breast Education Needed for Physicians and Patients

By Jim Knaub

California is one of 21 states with a breast density notification law, but a new study in the Journal of the American College of Radiology (JACR) suggests that nearly half of the state’s primary care physicians are unaware of the law. The online survey of primary care physicians found that 49% of 77 responding physicians had no knowledge of the law 10 months after it was passed.

The study from radiology researchers at the University of California, Davis (UC Davis) in December’s JACR is far from definitive, but it suggests that there’s a disconnect between passing a notification law and making people aware of it.

“Awareness among primary care clinicians of the California Breast Density Notification Law is low, and many do not feel comfortable answering breast density–related patient questions,” the authors wrote. “Breast imagers and institutions may need to devote additional time and resources to primary physician education in order for density notification laws to have significant impact on patient care.” Coauthors of the study are Kathleen A. Khong, MD; Jonathan Hargreaves, MD; Shadi Aminololama-Shakeri, MD; and Karen K. Lindfors, MD.

Stamatia Destounis, MD, sees the same need for more education on the opposite coast. At the Elizabeth Wende Breast Center in Rochester, New York, Destounis and her colleagues have been working to educate local physicians for three years, starting one year before New York’s notification law took effect in January 2013. She says the center worked with the county medical society to develop educational programs and published articles in the society’s newsletter to spread the word to physicians. They also used an e-mail campaign and worked to place articles on the topic in the local news media. The center created notification letters specific to both physicians and patients that were designed to explain breast density and appropriate follow-up steps to each audience.

“It’s an uphill struggle,” Destounis says. “It’s very hard to reach busy, overworked primary care physicians, nurse practitioners, and other health professionals.” Most weeks, Destounis says, she sees a patient who tells her that her doctor was not aware of dense breast concerns when the patient brought up the issue.

Physicians aren’t the only ones who need education about breast density. According to the grass roots advocacy group Each One Tell One, 85% of women don’t know what type of breast tissue they have, or whether they’re part of the approximately 40% of women with dense breast tissue. Each One Tell One and other advocacy organizations such as Are You Dense? are working to educate women about the ramifications of dense breast tissue and what to do when they learn they have dense breasts.

Progress is slow in this area. In the UC Davis survey, approximately one-third of physician respondents reported increased patient concern with breast density. In her practice, Destounis estimates that roughly 6% of the women who’ve received notification letters have followed up and pursued further screening since New York’s law took effect.

“People think you pass a law and the next day people are informed,” Destounis says. “That’s just not the case. It takes time. The education is slow and you’re not going to reach everyone.”

Disagreements about the merits of additional breast screening and the absence of clear insurance coverage in many states create confusion among women that hinders follow-up, according to Destounis. She also believes some women avoid follow-up because they fear finding bad news.

Despite the challenges, Destounis and others plan to keep going with both screening and education. “With the added ultrasound screening, we’re finding an additional three cancers per 1,000 women we screen,” Destounis says. “For those three women, the finding is huge.”

— Jim Knaub is editor of Radiology Today.