Psychological distress and use of psychosocial support in familial adenomatous polyposis
Article first published online: 20 APR 2009
Copyright © 2009 John Wiley & Sons, Ltd.
Volume 19, Issue 3, pages 289–298, March 2010
How to Cite
Douma, K. F. L., Aaronson, N. K., Vasen, H. F. A., Gerritsma, M. A., Gundy, C. M., Janssen, E. P. A., Vriends, A. H. J. T., Cats, A., Verhoef, S. and Bleiker, E. M. A. (2010), Psychological distress and use of psychosocial support in familial adenomatous polyposis. Psycho-Oncology, 19: 289–298. doi: 10.1002/pon.1570
- Issue published online: 25 FEB 2010
- Article first published online: 20 APR 2009
- Manuscript Accepted: 3 MAR 2009
- Manuscript Revised: 24 FEB 2009
- Manuscript Received: 2 SEP 2008
- psychological distress;
- psychosocial support;
- colorectal neoplasms;
- familial adenomatous polyposis;
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.