Patient Response to Receiving a Notification of Elevated Breast Cancer Risk after Regular Screening Mammogram

Background: Population-based screening for breast cancer risk can identify unaffected women at elevated risk and inform them of risk-management options. The James Cancer Hospital recently began assessing risk for women undergoing routine screening mammography. Women found to have ≥20% lifetime risk are notified – with their mammogram results via mail and electronic medical record – that they may be at elevated risk of breast cancer and should consider consulting a high-risk provider. This initial study examined findings from a subsample who participated 2–6 weeks post-notification. Purpose: We sought to determine whether women noticed and understood the notification, and to examine their reactions to the notification of elevated risk. Methods: Of 415 women recruited, 150 (36%) completed the survey, which included items to assess memory and comprehension of the notification, and whether participants had (a) seen a healthcare provider since the notification, and (b) discussed breast cancer risk and management options during that appointment. Results: Participants (aged 40–69; mean = 50.8 years) were mostly White (86%), well-educated (77%), and with above-average income (65%). Most remembered receiving the notification (73%), perceived the information not to be complex (73%), and were confident they understood the notification (93%). Somewhat fewer (64%) remembered that the notification indicated they may be at elevated risk for breast cancer, and 44% also recalled the suggestion to meet with a healthcare provider about this risk. Of the 28 participants who had already seen any healthcare provider in the few weeks since the notification, 50% discussed breast cancer risk during that appointment and 25% said they did so because of the notification. Discussions included family cancer history, actual risk of developing breast cancer, and options for additional imaging or testing. Conclusions: These findings indicate that population-based screening associated with routine mammography can motivate women at elevated breast cancer risk to discuss their risk and management options with a healthcare provider. For some proportion of women, however, complementary communication strategies may also be needed to ensure they gain awareness of their higher-risk status.