Psychological distress and use of psychosocial support in familial adenomatous polyposis

Authors

  • Kirsten F. L. Douma,

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

    1. Department 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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  • Miranda A. Gerritsma,

    1. Department of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute—Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands
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  • Chad M. Gundy,

    1. Department of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute—Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands
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  • Esther P. A. Janssen,

    1. Department of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute—Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands
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  • Annette H. J. T. Vriends,

    1. Department of Human and Clinical Genetics, Leiden University Medical Centre, Leiden, The Netherlands
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  • Annemieke Cats,

    1. Department of Medical Oncology, Division of Gastroenterology and Hepatology, The Netherlands Cancer Institute—Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands
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  • Senno Verhoef,

    1. Family Cancer Clinic, The Netherlands Cancer Institute—Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands
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  • Eveline M. A. Bleiker

    Corresponding author
    1. Department of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute—Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands
    • The Netherlands Cancer Institute—Antoni van Leeuwenhoek Hospital, Department of Psychosocial Research and Epidemiology, Plesmanlaan 121, 1066 CX Amsterdam, The Netherlands
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Abstract

Objective: Familial adenomatous polyposis (FAP) is characterized by multiple adenomas in the colorectum with a high risk to develop colorectal cancer. It is unclear whether individuals at risk of FAP experience distress due to this potentially life-threatening disease. This nationwide study assessed: (1) the prevalence of psychological distress; and (2) the need for and use of specialized professional psychosocial support.

Methods: In this cross-sectional study, all individuals from families at high risk for FAP registered at the Netherlands Foundation for the Detection of Hereditary Tumours were invited to complete a questionnaire assessing, among other issues, generalized, cancer-specific and FAP-specific distress.

Results: In total, 525 individuals completed the questionnaire. Approximately 20% of the respondents had moderate to severe levels of FAP-specific distress. Levels of generalized distress were comparable to the general Dutch population. Significantly more individuals with a FAP diagnosis had frequent cancer worries than those at risk of FAP or non-carriers (p=0.02). Distress levels were more strongly associated with psychosocial variables (e.g. perceived cancer risk), than with sociodemographic or clinical variables. Up to 43% of the variance in distress could be explained by all variables combined. Of those moderately to severely distressed, 26% had received specialized professional psychosocial support, while 30% of those did not receive the support they wanted.

Conclusions: A substantial minority of individuals reported moderate to severe distress levels associated with FAP. However, only one-third of those received specialized professional psychosocial support. We recommend the use of a screening questionnaire to identify individuals in need of such support. Copyright © 2009 John Wiley & Sons, Ltd.

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