Abstract
BackgroundBreast cancer risk reduction has the potential to decrease the incidence of the disease, yet remains underused. We report on the development a web-based tool that provides automated risk assessment and personalized decision support designed for collaborative use between patients and clinicians.MethodsUnder Institutional Review Board approval, we evaluated the decision tool through a patient focus group, usability testing, and provider interviews (including breast specialists, primary care physicians, genetic counselors). This included demonstrations and data collection at two scientific conferences (2009 International Shared Decision Making Conference, 2009 San Antonio Breast Cancer Symposium).ResultsOverall, the evaluations were favorable. The patient focus group evaluations and usability testing (N = 34) provided qualitative feedback about format and design; 88% of these participants found the tool useful and 94% found it easy to use. 91% of the providers (N = 23) indicated that they would use the tool in their clinical setting.ConclusionBreastHealthDecisions.org represents a new approach to breast cancer prevention care and a framework for high quality preventive healthcare. The ability to integrate risk assessment and decision support in real time will allow for informed, value-driven, and patient-centered breast cancer prevention decisions. The tool is being further evaluated in the clinical setting.
Highlights
Breast cancer risk reduction has the potential to decrease the incidence of the disease, yet remains underused
BreastHealthDecisions.org was developed through an iterative research process that allowed for continuous improvement of the decision support tool
Usability testing Information gathered from the focus group evaluations and usability testing provided qualitative feedback about format and design of the decision aid
Summary
Breast cancer risk reduction has the potential to decrease the incidence of the disease, yet remains underused. More than 2.4 million women in the United States are projected to benefit from breast cancer risk-reducing medications such as tamoxifen or raloxifene [1,2], fewer than 1% of eligible patients elect to take them [3,4]. Women’s risk of breast cancer and preferences for interventions around breast cancer screening and risk reduction vary widely and must be included in their decision making In this setting, there is a need for: 1) personalized risk assessment, 2) unbiased, comprehensive education about the options for risk reduction, and 3) an opportunity for meaningful consideration of the risks and benefits involved on the part of the patient
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