title: Psychological distress and use of psychosocial support in familial adenomatous polyposis.
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.
authors.affiliation: Department of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute-Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands.
authors.forename: Kirsten F L
authors.initials: KF
authors.lastname: Douma
authors.forename: Neil K
authors.initials: NK
authors.lastname: Aaronson
authors.forename: Hans F A
authors.initials: HF
authors.lastname: Vasen
authors.forename: Miranda A
authors.initials: MA
authors.lastname: Gerritsma
authors.forename: Chad M
authors.initials: CM
authors.lastname: Gundy
authors.forename: Esther P A
authors.initials: EP
authors.lastname: Janssen
authors.forename: Annette H J T
authors.initials: AH
authors.lastname: Vriends
authors.forename: Annemieke
authors.initials: A
authors.lastname: Cats
authors.forename: Senno
authors.initials: S
authors.lastname: Verhoef
authors.forename: Eveline M A
authors.initials: EM
authors.lastname: Bleiker
mesh_terms: D011125:Adenomatous Polyposis Coli / Q000150:complications / Q000523:psychology*; D000293:Adolescent; D000328:Adult; D000367:Age Factors; D000368:Aged; D000369:Aged, 80 and over; D005190:Family / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009426:Netherlands / Q000453:epidemiology; D015995:Prevalence; D011613:Psychotherapy / Q000706:statistics & numerical data; D012044:Regression Analysis; D012737:Sex Factors; D012944:Social Support; D012959:Socioeconomic Factors; D013315:Stress, Psychological / Q000453:epidemiology / Q000209:etiology* / Q000523:psychology; D011795:Surveys and Questionnaires; D055815:Young Adult