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Psychological distress and quality of life of partners of individuals with familial adenomatous polyposis

Authors

  • Kirsten F. L. Douma,

    1. Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute - Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands
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  • Eveline M. A. Bleiker,

    1. Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute - Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands
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  • Hans F. A. Vasen,

    1. The Netherlands Foundation for the Detection of Hereditary Tumours, Leiden, The Netherlands
    2. Department of Gastroenterology, Leiden University Medical Centre, Leiden, The Netherlands
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  • Chad M. Gundy,

    1. Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute - Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands
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  • Miranda A. Gerritsma,

    1. Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute - Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands
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  • Neil K. Aaronson

    Corresponding author
    1. Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute - Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands
    • Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands
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Abstract

Objective: Familial adenomatous polyposis (FAP) is a genetic condition characterized by the development of multiple adenomas in the colorectum that could lead to colorectal cancer. Our aim was to assess levels and predictors of psychological distress and quality of life (QOL) among partners of FAP-patients.

Methods: A nationwide, cross-sectional survey using validated self-report questionnaires assessing psychological distress and QOL.

Results: One hundred and twenty-nine partners completed the questionnaire (84% response rate), 30% of whom reported moderate-to-severe levels of distress. The partners' distress was associated significantly with the patients' distress, having children, and feelings of guilt. Fifty-seven percent of the partners with moderate-to-severe distress levels had received professional psychosocial support. Partners did not differ significantly from the general population in QOL. However, 9–21% reported that FAP had affected their work, leisure time activities, and relationships.

Conclusions: Clinicians should be particularly alert for heightened distress levels in partners of patients who are themselves distressed, and among those with children. Copyright © 2010 John Wiley & Sons, Ltd.

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