Facilitating informed decisions about breast cancer screening: development and evaluation of a web-based decision aid for women in their 40s

BACKGROUND: Expert groups and national guidelines recommend individualized decision making about screening mammography for women in their 40s at low-to-average risk of breast cancer. We created Breast Screening Decisions (BSD), a personalized, web-based decision aid, to help women decide when to start and how often to have routine screening mammograms. We evaluated BSD in a large, prospective pilot trial of women and their clinicians. METHODS: Women ages 40–49 were invited to use BSD before a scheduled preventive care visit. One month post-visit, users were asked about decisional conflict, knowledge, perceptions and worry about breast cancer and screening. They were also asked whether they had a screening mammogram since their visit, scheduled an appointment for a screening mammogram, or if they were planning to schedule an appointment within the next six months. Women who responded “no” to each of these successive questions were considered to have no plan for a screening mammogram within the next 6 months, unless they explicitly stated that they were unsure about screening mammography. Clinicians were surveyed regarding mammography discussions and perceived patient knowledge and anxiety. RESULTS: Of 1,100 women invited to use BSD, 253 accessed the website, and 168 were eligible to participate in the pilot study. One-fifth had a family history of breast cancer, and at least 76% had any prior mammogram. At follow-up, 88% of BSD users reported discussing mammography at their visit, and 77% said they had a screening mammogram since the visit or that they made or were planning to make a screening mammogram appointment. The average decisional conflict score was 22.5, within the threshold for implementing decisions. Decisional conflict scores were lowest in women who said that they had or planned to have a mammogram (mean 21.4, 95% CI 18.3-24.6), higher in those who did not (mean 24.8, 95% CI 19.2-30.5), and highest in those who were unsure (mean 31.5, 95% CI 13.9-49.1). Most BSD users expressed accurate perceptions of their breast cancer risk and the benefits and limitations of screening. CONCLUSIONS: A web-based decision aid may support informed, individualized decisions about screening mammography and facilitate discussions about screening between women in their 40s and their clinicians. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12911-017-0423-7) contains supplementary material, which is available to authorized users.