Psychological distress and use of psychosocial support in familial adenomatous polyposis

Psychooncology. 2010 Mar;19(3):289-98. doi: 10.1002/pon.1570.


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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adenomatous Polyposis Coli / complications
  • Adenomatous Polyposis Coli / psychology*
  • Adolescent
  • Adult
  • Age Factors
  • Aged
  • Aged, 80 and over
  • Family / psychology
  • Female
  • Humans
  • Male
  • Middle Aged
  • Netherlands / epidemiology
  • Prevalence
  • Psychotherapy / statistics & numerical data
  • Regression Analysis
  • Sex Factors
  • Social Support*
  • Socioeconomic Factors
  • Stress, Psychological / epidemiology
  • Stress, Psychological / etiology*
  • Stress, Psychological / psychology
  • Surveys and Questionnaires
  • Young Adult