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Douma, K.F.L.; Aaronson, N.K.; Vasen, H.F.A.; Gerritsma, M.A.; Gundy, C.M.; Janssen, E.P.A.; ... ; Bleiker, E.M.A. (2010)

Psychological distress and use of psychosocial support in familial adenomatous polyposis

Article / Letter to editor
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 FA P experience distress due to this potentially life-threatening disease. This nationwide study assessed: (I) 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...Show moreObjective: 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 FA P experience distress due to this potentially life-threatening disease. This nationwide study assessed: (I) 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 (C) 2009 John Wiley & Sons, Ltd.Show less
psychological distress psychosocial support colorectal neoplasms cancer familial adenomatous polyposis oncology hereditary colorectal-cancer late-onset disorders breast-cancer ovarian-cancer psychiatric morbidity genetic predisposition assessment device risk perception women impact
All authors
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.; Bleiker, E.M.A.
Date
2010-03-31
Journal
Psycho-Oncology
Volume
19
Issue
3
Pages
289 - 298
DOI
doi:10.1002/pon.1570