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.
Women 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.
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).
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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We dedicate this research study in honour of Melanie Price who made significant contributions to further the field of psycho-oncology. Melanie was a tireless advocate for individuals affected by cancer, and their families. We, as well as the cancer genetics community as a whole, are saddened by the passing of our co-author Henry T. Lynch, M.D., a renowned researcher and true pioneer in the study of hereditary cancer. Henry was a mentor and friend to several of us and will be greatly missed.
Ethics approval and consent to participate
The following institutional review boards approved the study: RTI International Institutional Review Board, Research Triangle Park, USA; Social Behavioral Institutional Review Board, Creighton University, Omaha, USA; Research Office, Central Manchester University Hospitals NHS Foundation Trust, Manchester, UK; The Peter MacCallum Cancer Centre Ethics Committee, Melbourne, Australia; Women’s College Hospital Research Ethics Board, Toronto, Canada. All participants provided informed consent prior to their inclusion in the study. This study was performed in accordance with the Declaration of Helsinki.
Consent to publish
The data that support the findings of this study are available from the corresponding author upon reasonable request.
D.C.H. discloses salary compensation and stock ownership with Amgen Inc. (Thousand Oaks, CA). A.L. discloses salary and stock ownership with Amgen Inc. during the time of study conduct; salary and stock ownership with AbbVie Inc. (North Chicago, IL) as of April 2019. C.M. is a current and J.P. is a former employee of RTI Health Solutions that were contracted by Amgen Inc. for the conduct of this study. S.A.N. is an Editorial Board Member of the British Journal of Cancer. No other conflicts of interest are declared for remaining authors.
RTI Health Solutions received funding from Amgen Inc. (Thousand Oaks, CA, USA) for this study (study no. 20140153). This publication was also supported by revenue from Nebraska’s excise tax on cigarettes awarded to Creighton University through the Nebraska Department of Health & Human Services (DHHS). Its contents represent the views of the authors and do not necessarily represent the official views of the State of Nebraska or DHHS. Funding was also received from the Liz’s Legacy fund through Kicks for a Cure. Dr. H.T.L.’s work was partially funded through the Charles F. and Mary C. Heider Chair in Cancer Research, which he held at Creighton University. D.G.E. is supported by the all Manchester NIHR Biomedical Research Centre (IS-BRC-1215-20007).
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Metcalfe, K.A., Price, M.A., Mansfield, C. et al. Predictors of long-term cancer-related distress among female BRCA1 and BRCA2 mutation carriers without a cancer diagnosis: an international analysis. Br J Cancer 123, 268–274 (2020). https://doi.org/10.1038/s41416-020-0861-3