Long-Term Psychosocial Outcomes of BRCA1/BRCA2 Testing: Differences across Affected Status and Risk-Reducing Surgery Choice
- 1 March 2012
- journal article
- research article
- Published by American Association for Cancer Research (AACR) in Cancer Epidemiology, Biomarkers & Prevention
- Vol. 21 (3), 445-455
- https://doi.org/10.1158/1055-9965.epi-11-0991
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.This publication has 44 references indexed in Scilit:
- Long‐term outcomes of BRCA1/BRCA2 testing: risk reduction and surveillanceCancer, 2011
- Cancer risk management strategies and perceptions of unaffected women 5 years after predictive genetic testing for BRCA1/2 mutationsEuropean Journal of Human Genetics, 2011
- Association of Risk-Reducing Surgery in BRCA1 or BRCA2 Mutation Carriers With Cancer Risk and MortalityJAMA, 2010
- Cognitive and emotional factors predicting decisional conflict among high-risk breast cancer survivors who receive uninformative BRCA1/2 results.Health Psychology, 2009
- Distress among women receiving uninformativeBRCA1/2results: 12-month outcomesPsycho‐Oncology, 2009
- Uptake, Time Course, and Predictors of Risk-Reducing Surgeries inBRCACarriersGenetic Testing and Molecular Biomarkers, 2009
- Randomized trial of a decision aid for BRCA1/BRCA2 mutation carriers: Impact on measures of decision making and satisfaction.Health Psychology, 2009
- International variation in rates of uptake of preventive options in BRCA1 and BRCA2 mutation carriersInternational Journal of Cancer, 2008
- Predictive genetic testing for BRCA1/2 in a UK clinical cohort: three-year follow-upBritish Journal of Cancer, 2007
- Predictors and outcomes of contralateral prophylactic mastectomy among breast cancer survivorsBreast Cancer Research and Treatment, 2006