Mailed Notices of High Breast Cancer Risk Do Not Often Translate Into Behavior Changes

By Linda Carroll

March 31, 2020

(Reuters Health) - Most women who are notified by mail that they have a high risk of breast cancer are unlikely to do anything about it, a small study suggests.

Among the 66 women who were told in a mailing that their lifetime cancer risk was 20% or greater, just 10 engaged in any kind of breast cancer risk-management behavior, according to results in the Journal of the American College of Radiology.

"Trying to reach out to high-risk women using their annual screening mammogram report had limited success, with many women not really getting the message that they are at high risk and only one in seven women taking any action about their risk," said study coauthor Dr. Richard Roetzheim, lead physician at the H. Lee Moffitt Cancer Center Breast Surveillance Clinic in Tampa, Florida.

"It's possible that over time women would eventually get the message about their risk through their screening mammogram reports, but it is likely that more intensive efforts are needed," Roetzheim said in an email. "It is possible that including their primary care doctor in the strategy or having separate communications about the risk would be more effective."

Risk stratification models determine a woman's lifetime risk of developing breast cancer or of carrying a deleterious germline mutation that increases their risk, the authors note. Women at 20% or greater lifetime risk of breast cancer are eligible for supplemental screening breast MRI. Women at 1.7% or greater 5-year risk of breast cancer are also eligible for risk-reducing medications. Women at 5% or greater risk of carrying a BRCA1/2 pathogenic variant may benefit from genetic risk assessment, they add.

To examine the impact of notifying patients of their high breast cancer risk by mail, the researchers followed 66 patients who had received a mammogram and who had electronically submitted their medical histories when they checked in for their appointments.

Before sending out the notifications, the researchers asked 10 patients undergoing screening mammograms and 10 providers who frequently order mammograms to review the letters and give feedback.

The final version of the letters contained the mammogram result, risk stratification results based on any of three models and indicating high risk, as well as American Cancer Society recommendations for supplemental screening MRI and contact information for the high-risk clinic.

Six months after the letters were mailed, surveys and informed consent documents were sent out. Participants received a $30 gift card after sending back the completed survey.

Patients in the study were mostly non-Hispanic white women, average age 52, who were college educated and privately insured.

At the six-month follow-up, 20 of the 66 patients said they did not recall receiving the letter detailing their risk. Another 19 recalled receiving the letter but incorrectly recalled their risk as being average, low or did not know. Less than half correctly identified themselves as being at high risk.

Post mammography, 10 of the 66 women had engaged in some sort of breast cancer risk-management behavior. Those who correctly recalled their high-risk status were 2.4 times more likely to report uptake of any risk management strategy compared to women who did not accurately remember their status.

Among the 10 women who engaged in any risk-management behavior, four attended a high-risk clinic appointment, six underwent a breast MRI, one started risk-reducing medication, three attended genetic counseling and three completed genetic testing. Five engaged in more than one risk-management behavior.

"This study shows that to communicate risk and to allow more women to take advantage of supplemental screening is not easy," said Dr. Laurie Margolies, section chief of breast imaging at the Mount Sinai Health System and a professor of radiology at the Icahn School of Medicine at Mount Sinai in New York City.

"The radiology community needs to engage with patients in a way that resonates with them," Dr. Margolies, who wasn't involved in the study, said in an email. "We need to explain the benefits of supplemental screening and genetic testing and make it readily available."

Communicating risk to breast cancer patients may require face-to-face meetings, said Dr. Margarita Zuley, chief of breast imaging at UPMC Magee-Womens Hospital in Pittsburgh, who also wasn't involved in the study.

Of particular concern from this study is the fact that many women with high risk underestimated their risk, Dr. Zuley said. Part of the problem may be the way the risk assessments were communicated to the women, she added.

"Knowing what to do with the results requires an understanding of the different risk models," Dr. Zuley said. "They can create quite disparate estimates of lifetime risk. Producing a report with multiple different lifetime risk assessments could cause confusion."

At UPMC, women with elevated risk are offered the opportunity to have a face-to-face meeting with a counselor, Zuley said. "Then they can go over the different parameters and have a dialog with a knowledgeable person and can make a better judgement for themselves," she added.

SOURCE: Journal of the American College of Radiology, online March 27, 2020.