Abstract

Problem Identification Many BRCA1/2 carriers experience an increase in distress after diagnosis; however, there is a need to review the longer term psychological implications of genetic confirmation and the factors associated with persistent distress. Literature Search This article systematically reviewed the literature in line with PRISMA guidelines on distress a minimum of six months after BRCA1/2 confirmation focusing on prevalence rates and factors associated with distress. Data Evaluation and Synthesis Fifteen studies were identified for inclusion and a narrative synthesis was conducted. Distress was associated with a range of demographic, clinical and psychological factors. A consistent finding was that although most carriers experience a reduction in distress 6–12 months after BRCA1/2 confirmation, those who experience persistent distress are more likely to have had higher distress levels at time of genetic testing. Risk reducing surgery may also play a role in reducing distress. Conclusion The review highlights the importance of psychological assessment and the use of specific distress measures. Given the considerable challenges in synthesizing the data there is a need for further prospective studies of high methodological quality.

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