Abstract
BackgroundFemale BRCA mutation carriers have an increased lifetime risk for breast and ovarian cancer compared to the general population. Women who carry this mutation have several options to deal with their cancer risk, such as risk-reducing surgeries or intensified breast cancer screening. Previous research has shown that preferences in this scenario are highly dependent on affected women’s personalities and value systems. To support these women in the decision-making process, a structured decision support consisting of decision coaching combined with a decision aid might be helpful.Methods/designA randomized controlled trial will be conducted in order to compare usual care with structured decision support alongside usual care. The decision support program entails nurse-led decision coaching as well as an evidence-based patient decision aid. Nurses are qualified by a 4-day training program in informed decision-making and decision coaching. Six centers for Familial Breast and Ovarian Cancer in Germany will be included in the study, with a planned sample size of 398 women.The primary outcome is the congruence between the preferred and the actual played role in the decision-making process as measured by the Control Preferences Scale. It is hypothesized that the structured decision support will enable women to play the preferred role in the decision-making process. Secondary outcomes include the knowledge and attitudes about preventive options, decisional conflict, depression and anxiety, coping self-efficacy, impact of event, and self-concept. A process evaluation will accompany the study.DiscussionThe EDCP-BRCA study is the first study to implement and evaluate decision coaching combined with a decision aid for healthy BRCA mutation carriers worldwide.Trial registration {2a}DRKS-ID: DRKS00015527. Registered 30 October 2019.
Highlights
Female BRCA mutation carriers have an increased lifetime risk for breast and ovarian cancer compared to the general population
The EDCP-BRCA study is the first study to implement and evaluate decision coaching combined with a decision aid for healthy BRCA mutation carriers worldwide
One study reported that women with intact ovaries reduce their breast cancer risk through bilateral mastectomy by 90%, while women who had prior salpingo-oophorectomies reduced their risk by 95% [10], indicating that salpingo-oophorectomies have an impact on breast cancer risk
Summary
Female BRCA mutation carriers have an increased lifetime risk for breast and ovarian cancer compared to the general population. Women who carry this mutation have several options to deal with their cancer risk, such as risk-reducing surgeries or intensified breast cancer screening. A mutation in either of these two genes has been found to significantly increase the risk of breast and ovarian cancer development, with an approximately 72% (95% confidence interval (CI) 65–79) or 69% (95% CI 61–77) cumulative lifetime risk (up to the age of 80 years) for breast cancer for BRCA1 or BRCA2 mutation carriers, respectively. The lifetime risk for breast cancer in the general population is roughly 13%, while the risk for ovarian cancer is around 1%
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