Development and acceptability of a decision aid for women with a BRCA pathogenic variant considering cancer risk management strategies

Abstract

　Women with a BRCA pathogenic variant are required to manage the risk of breast and ovarian cancer. Decision-making of the optimal strategy (e.g., prophylactic surgery, chemoprevention, or surveillance) is very complex and difficult due to uncertain effects and impact. This study aimed to develop a decision aid for women with a BRCA pathogenic variant and evaluate its acceptability. The International Patient Decision Aids Standards were used as a guide for an evidence-based development process. We created a prototype using the Ottawa Decision Support framework. During its development, we conducted required assessment from six experts. Once completed, its acceptability was assessed via semi-structured interviews, which included open-ended feedback, with 27 women with a BRCA pathogenic variant. All the participants felt the decision aid would have been helpful during their consultation and recommended it for future patients. However, many participants indicated the need for further information regarding the various symptoms after risk-reducing salpingo-oophorectomy and the cost of each medical strategy. Acceptability of the decision aid was high. Furthermore, based on the evaluation, it was further revised to meet the needs.