The psychosocial and behavioral impact of familial adenomatous polyposis

Colorectal cancer is the second most common form of cancer among women and the third among men in Western countries; about 5-10% of these cancers are of hereditary nature. Familial Adenomatous Polyposis (FAP) is one of these hereditary cancer syndromes. In this thesis a study is described which examines the psychosocial and behavioral impact of FAP on individuals belonging to FAP families in the Netherlands. What is the impact of FAP on FAP-patients, their partners and their relatives? Is there a need for professional psychosocial support? Do patients comply with the advice for colorectal cancer screening? What is the attitude towards having children with the use of reproductive techniques and towards childhood DNA testing? This study aims to answer these questions and gives suggestions for clinical practice and future research

Psychological distress and use of psychosocial support in 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 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.Cellular mechanisms in basic and clinical gastroenterology and hepatolog