BREASTHEALTHDECISIONS.ORG: RISK ASSESSMENT AND DECISION SUPPORT FOR BREAST CANCER PREVENTION

Purpose:  Despite compelling evidence indicating chemopreventive agents can reduce the risk of developing certain cancers, they remain underused. This is common in elective therapies that hold the possibility of side effects. Effective risk stratification and communication are critical for identifying those patients who stand to benefit most from these agents, and can facilitate quality decision making.  However, there are few tools that integrate risk assessment and decision support, which is particularly true in the setting of breast cancer prevention. To address this critical gap in healthcare delivery, we developed and evaluated www.BreastHealthDecisions.org. This decision tool provides automated risk assessment and internet-based, patient-tailored decision support.

Method: Development Methods: www.BreastHealthDecisions.org was developed to guide informed, value-driven, and patient-centered breast cancer prevention decisions.  We implemented four commonly used breast cancer risk prediction models to provide women with automated, individualized breast cancer risk assessments. Our internet-based decision aid is then tailored to individual patients based on their risk predictions and designed to be used by patients alone prior to a consultation and also for use by both patients and providers at the point of care, during the consultation.  The decision aid is designed to integrate patient data from multiple sources including electronic surveys, electronic medical record (EMR), and other databases.   Evaluation Methods: Under Institutional Review Board approval, we evaluated the decision tool through patient focus groups, 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)

Result: Overall, 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.

Conclusion:  www.BreastHealthDecisions.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 allows for informed, value-driven, and patient-centered breast cancer prevention decisions.  The tool is being further evaluated in a randomized controlled trial designed to determine the optimal mode of delivery in the primary care setting.