Tolerance for uncertainty and perceived risk among women receiving uninformative BRCA1/2 test results

Authors

  • Suzanne C. O'Neill,

    Corresponding author
    • Social and Behavioral Research Branch, NHGRI, NIH, 10 Center Drive, Building 2, Room 5E14, Bethesda, MD 20892.
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    • Suzanne C. O'Neill, Ph.D., is a Postdoctoral Fellow at the UNC Lineberger Comprehensive Cancer Center in Chapel Hill, North Carolina.

  • Tiffani DeMarco,

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    • Tiffani DeMarco, M.S., is a Genetic Counselor in the Department of Oncology/Division of Cancer Control at Lombardi Comprehensive Cancer Center, Georgetown University in Washington, DC.

  • Beth N. Peshkin,

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    • Beth N. Peshkin, M.S., C.G.C., is a Research Assistant Professor in the Departments of Oncology and Medicine at Lombardi Comprehensive Cancer Center, Georgetown University in Washington, DC.

  • Sarah Rogers,

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    • Sarah Rogers, B.S., was a Research Assistant in the Department of Oncology/Division of Cancer Control at Lombardi Comprehensive Cancer Center, Georgetown University in Washington, DC.

  • Jessica Rispoli,

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    • Jessica Rispoli, M.G.C., C.G.C., is a Genetic Counselor at the Baltimore Washington Medical Center, Tate Cancer Center, Glen Burnie, Maryland.

  • Karen Brown,

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    • Karen Brown, M.Sc., is an Assistant Professor in the Department of Human Genetics, Mount Sinai School of Medicine, New York, New York.

  • Heiddis Valdimarsdottir,

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    • Heiddis Valdimarsdottir, Ph.D., is an Assistant Professor in the Department of Oncological Sciences, Mount Sinai School of Medicine, New York, New York.

  • Marc D. Schwartz

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    • Marc D. Schwartz, Ph.D., is an Associate Professor in the Department of Oncology and Co-Director of the Division of Cancer Control at Lombardi Comprehensive Cancer Center, Georgetown University in Washington, DC.


  • How to cite this article: O'Neill SC, DeMarco T, Peshkin BN, Rogers S, Rispoli J, Brown K, Valdimarsdottir H, Schwartz MD. 2006. Tolerance for uncertainty and perceived risk among women receiving uninformative BRCA1/2 test results. Am J Med Genet Part C Semin Med Genet 142C:251–259.

Abstract

Women who receive uninformative BRCA1/2 genetic test results face ongoing uncertainty about their future cancer risks. This article prospectively examined the influence of intolerance for uncertainty and perceived breast cancer risk on psychological distress following the receipt of uninformative BRCA1/2 test results. Sixty-four women who received uninformative BRCA1/2 mutation test results completed measures of Intolerance for Uncertainty, perceived breast cancer risk, and measures of cancer-related, genetic testing, and general distress. Cancer-related (ΔR2 = 0.18, P ≤ 0.001), general (ΔR2 = 0.04, P ≤ 0.05), and genetic testing distress (ΔR2 = 0.12, P ≤ 0.01) were associated with intolerance for uncertainty at 1 month post-disclosure. The interaction of intolerance for uncertainty and breast cancer perceived risk predicted cancer-related (ΔR2 = 0.10, P ≤ 0.001) and genetic testing distress (ΔR2 = 0.09, P ≤ 0.01) at 6 months post-disclosure. Distress was highest among patients with highest perceived risk and intolerance for uncertainty, suggesting that those who have difficulty coping with their ambiguous risk are at risk for long-term distress. The clinical and research implications of these results are discussed. © 2006 Wiley-Liss, Inc.

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