Abstract
BackgroundWomen with a BRCA1 or BRCA2 mutation have high lifetime risks of developing breast and ovarian cancers. We sought to estimate the prevalence of cancer-related distress and to identify predictors of distress in an international sample of unaffected women with a BRCA mutation.MethodsWomen with a BRCA1/2 mutation and no previous cancer diagnosis were recruited from the United States, Canada, the United Kingdom, Australia and from a national advocacy group. Using an online survey, we asked about cancer risk reduction options and screening, and we measured cancer-related distress using the Impact of Event Scale.ResultsAmong 576 respondents, mean age was 40.8 years (SD = 8.1). On average 4.9 years after a positive test result, 16.3% of women reported moderate-to-severe cancer-related distress. Women who had undergone risk-reducing breast and ovarian surgery were less likely to have (moderate or severe) cancer-related distress compared to other women (22.0% versus 11.4%, P value = 0.007). Women recruited from the advocacy group were more likely to have cancer-related distress than other women (21.6% versus 5.3%, P value = 0.002).ConclusionsApproximately 16% of women with a BRCA1 or BRCA2 mutation experience distress levels comparable to those of women after a cancer diagnosis. Distress was lower for women who had risk-reducing surgery.
Highlights
Women with a BRCA1 or BRCA2 mutation have high lifetime risks of developing breast and ovarian cancers
We report on frequency and predictors of cancer-related distress in a large international cohort of unaffected women with BRCA1 or BRCA2 mutations aged 25 to 55 years
Recruitment was between January 2015 and March 2016 via six sources across the United States, Canada, United Kingdom and Australia, including the patient advocacy group Facing Our Risk of Cancer Empowered (FORCE), clinical research registries at Creighton University (USA), Women’s College Hospital (Canada), The Royal Melbourne Hospital (Australia), the Kathleen Cunningham Foundation Consortium for Research into Familial breast cancer at Peter MacCallum Cancer Centre (Australia) and Manchester Centre for Genomic Medicine (UK)
Summary
Women with a BRCA1 or BRCA2 mutation have high lifetime risks of developing breast and ovarian cancers. Women who had undergone risk-reducing breast and ovarian surgery were less likely to have (moderate or severe) cancer-related distress compared to other women (22.0% versus 11.4%, P value = 0.007). Since testing for BRCA1 and BRCA2 began in the 1990s, there has been keen interest in the psychosocial consequences of genetic testing.[1,2,3,4,5,6] The risk of developing breast cancer by age 80 years is ~72% for BRCA1 mutation carriers and 69% for BRCA2 mutation carriers; the risk for ovarian cancer is 44% for BRCA1 carriers and 17% for BRCA2 carriers.[7] Healthy women with a mutation are given information about these risks and have the options of riskreducing surgery and screening. It is anticipated that receipt of this genetic information will be stressful for many women, but it is not clear how many experience significant distress, nor the duration of distress.[4,6] The majority of psychosocial research in women with a BRCA1 or BRCA2 mutation suggests that distress increases immediately following the receipt of positive genetic test results, but return to baseline levels or below with time.[4,6] the majority of research has focussed on women from academic genetic testing clinics, has included women with negative and positive BRCA results and has included women with and without a cancer diagnosis
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