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Cancer Epidemiology, Biomarkers & Prevention
Cancer Epidemiology, Biomarkers & Prevention
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Long-Term Psychosocial Outcomes of BRCA1/BRCA2 Testing: Differences across Affected Status and Risk-Reducing Surgery Choice

Kristi D. Graves, Patti Vegella, Elizabeth A. Poggi, Beth N. Peshkin, Angie Tong, Claudine Isaacs, Clinton Finch, Scott Kelly, Kathryn L. Taylor, George Luta and Marc D. Schwartz
Kristi D. Graves
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Patti Vegella
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Elizabeth A. Poggi
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Beth N. Peshkin
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Angie Tong
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Claudine Isaacs
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Clinton Finch
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Scott Kelly
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Kathryn L. Taylor
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George Luta
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Marc D. Schwartz
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DOI: 10.1158/1055-9965.EPI-11-0991 Published March 2012
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Abstract

Background: Numerous studies have documented the short-term impact of BRCA1/BRCA2 (BRCA1/2) testing; however, little research has examined the long-term impact of testing. We conducted the first long-term prospective study of psychosocial outcomes in a U.S. sample of women who had BRCA1/2 testing.

Methods: Participants were 464 women who underwent genetic testing for BRCA1/2 mutations. Prior to testing, we measured sociodemographics, clinical variables, and cancer specific and general distress. At long-term follow-up (Median = 5.0 years; Range = 3.4–9.1 years), we assessed cancer-specific and genetic testing distress, perceived stress, and perceived cancer risk. We evaluated the impact of BRCA1/2 test result and risk-reducing surgery on long-term psychosocial outcomes.

Results: Among participants who had been affected with breast or ovarian cancer, BRCA1/2 carriers reported higher genetic testing distress (β = 0.41, P < 0.0001), uncertainty (β = 0.18, P < 0.0001), and perceived stress (β = 0.17, P = 0.005) compared with women who received negative (i.e., uninformative) results. Among women unaffected with breast/ovarian cancer, BRCA1/2 carriers reported higher genetic testing distress (β = 0.39, P < 0.0001) and lower positive testing experiences (β = 0.25, P = 0.008) than women with negative results. Receipt of risk-reducing surgery was associated with lower perceived cancer risk (P < 0.0001).

Conclusions: In this first prospective long-term study in a U.S. sample, we found modestly increased distress in BRCA1/2 carriers compared with women who received uninformative or negative test results. Despite this modest increase in distress, we found no evidence of clinically significant dysfunction.

Impact: Although a positive BRCA1/2 result remains salient among carriers years after testing, testing does not seem to impact long-term psychologic dysfunction. Cancer Epidemiol Biomarkers Prev; 21(3); 445–55. ©2012 AACR.

Footnotes

  • Note: Institutional Review Board approval was granted for this study and all participants provided informed consent.

  • Received October 19, 2011.
  • Revision received December 14, 2011.
  • Accepted December 22, 2011.
  • ©2012 American Association for Cancer Research.
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Cancer Epidemiology Biomarkers & Prevention: 21 (3)
March 2012
Volume 21, Issue 3
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Long-Term Psychosocial Outcomes of BRCA1/BRCA2 Testing: Differences across Affected Status and Risk-Reducing Surgery Choice
Kristi D. Graves, Patti Vegella, Elizabeth A. Poggi, Beth N. Peshkin, Angie Tong, Claudine Isaacs, Clinton Finch, Scott Kelly, Kathryn L. Taylor, George Luta and Marc D. Schwartz
Cancer Epidemiol Biomarkers Prev March 1 2012 (21) (3) 445-455; DOI: 10.1158/1055-9965.EPI-11-0991

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Long-Term Psychosocial Outcomes of BRCA1/BRCA2 Testing: Differences across Affected Status and Risk-Reducing Surgery Choice
Kristi D. Graves, Patti Vegella, Elizabeth A. Poggi, Beth N. Peshkin, Angie Tong, Claudine Isaacs, Clinton Finch, Scott Kelly, Kathryn L. Taylor, George Luta and Marc D. Schwartz
Cancer Epidemiol Biomarkers Prev March 1 2012 (21) (3) 445-455; DOI: 10.1158/1055-9965.EPI-11-0991
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