BACKGROUND: Distress levels among female BRCA1 and BRCA2 mutation carriers can be similar to levels reported among breast cancer patients. However, there is a lack of data on long-term psychosocial functioning, and it is not known if uptake of risk-reducing surgery influences long-term cancer related distress in women with a BRCA mutation who are unaffected with cancer. The objective of this study was to evaluate long-term cancer-related distress in women with a BRCA mutation, and to evaluate predictors of distress, including uptake of cancer risk reducing surgery.
METHODS: Female BRCA1 or BRCA2 mutation carriers, ages 25-55, and without cancer were eligible to complete the survey online. A validated instrument, Impact of Events Scale (IES)-Revised (Horowitz 1979, Weis & Marmar 1995; 0-80 overall scale), was used to assess current levels of cancer risk-related psychological distress. Respondents were recruited through the Facing Our Risk of Cancer Empowered (FORCE) advocacy organization, which includes women at high risk of breast cancer. This interim analysis is part of a larger multi-center patient preference study of BRCA mutation carriers designed to assess women's willingness to adopt hypothetical treatments to prevent breast cancer. Linear regression was used to evaluate predictors of IES distress levels.
RESULTS: Between January and April 2015, 259 women completed the survey. The mean age of the participants was 41 years, and the mean time since receipt of genetic test results was 3.5 years (range 0-16; median 2 years). One hundred thirty-six (52%) women elected for prophylactic bilateral mastectomy (PBM), 139 (54%) elected for bilateral salpingo oophorectomy (BSO) (93 [36%] women had both surgeries), and 77 (30%) had not undergone risk-reducing surgery. The mean total IES score was 15.1 (range 0-72; median 11). Overall, 54 (21%) women reported moderate or severe cancer-related distress, and those who had undergone risk-reducing surgery reported lower perceived risk of developing breast cancer. Results to date indicate that shorter time since notification of mutation status, not having PBM (with or without BSO) (table), and not completing post-secondary education were independent predictors of higher IES distress scores.
CONCLUSIONS: This study measured cancer-related distress in a large population of women with BRCA mutations who participate in the FORCE online support community. Higher levels of distress were associated with not having PBM and more recent genetic test disclosure. These findings are specific to a more informed community of women with high levels of understanding of cancer risk than may be seen in the clinical setting.
