Metcalfe KA, Price MA, Mansfield C, Hallett DC, Lindeman GJ, Fairchild A, Posner J, Friedman S, Snyder C, Kathleen Cunningham Foundation Consortium for Research into Familial Breast Cancer, Lynch HT, Evans DG, Narod SA, Liede A. Predictors of long-term cancer-related distress among female BRCA1 and BRCA2 mutation carriers without a cancer diagnosis: an international analysis. Br J Cancer. 2020 Jul 21;123:268-74. doi: 10.1038/s41416-020-0861-3.

BACKGROUND: Women 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.

METHODS: Women with a BRCA1/2 mutation and no previous cancer diagnosis were recruited from the USA, Canada, the UK, 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.

Among 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).

CONCLUSIONS: Approximately 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.

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