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Open Access 01-12-2014 | Research

Long-term satisfaction and quality of life following risk reducing surgery in BRCA1/2 mutation carriers

Authors: Gillian W Hooker, Lesley King, Lauren VanHusen, Kristi Graves, Beth N Peshkin, Claudine Isaacs, Kathryn L Taylor, Elizabeth Poggi, Marc D Schwartz

Published in: Hereditary Cancer in Clinical Practice | Issue 1/2014

Abstract

Background

As BRCA1/2 testing becomes more routine, questions remain about long-term satisfaction and quality of life following testing. Previously, we described long term distress and risk management outcomes among women with BRCA1/2 mutations. This study addresses positive psychological outcomes in BRCA1/2 carriers, describing decision satisfaction and quality of life in the years following testing.

Methods

We evaluated satisfaction with testing and management decisions among 144 BRCA1/2 carriers. Prior to genetic testing, we assessed family history, sociodemographics and distress. At a mean of 5.3 years post-testing, we assessed management decisions, satisfaction with decisions and, among women with cancer, quality of life.

Results

Overall, satisfaction with decision making was high. Women who had risk reducing mastectomy or oophorectomy were more satisfied with management decisions. Participants who obtained a risk reducing oophorectomy were more satisfied with their genetic testing decision. Among affected carriers, high pretest anxiety was associated with poorer quality of life and having had risk reducing mastectomy prior to testing was associated with better quality of life. The negative impact of pre-test anxiety was diminished among women who had mastectomies before testing.

Conclusions

BRCA1/2 carriers are satisfied with their testing and risk management decisions and report good quality of life years after testing. Having risk reducing surgery predicts increased satisfaction and improved quality of life.

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Title: Long-term satisfaction and quality of life following risk reducing surgery in BRCA1/2 mutation carriers
Authors: Gillian W Hooker
Lesley King
Lauren VanHusen
Kristi Graves
Beth N Peshkin
Claudine Isaacs
Kathryn L Taylor
Elizabeth Poggi
Marc D Schwartz
Publication date: 01-12-2014
Publisher: BioMed Central
Published in: Hereditary Cancer in Clinical Practice / Issue 1/2014
Electronic ISSN: 1897-4287
DOI: https://doi.org/10.1186/1897-4287-12-9

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Abstract

Background

Methods

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Conclusions

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