title: Long-term compliance with endoscopic surveillance for familial adenomatous polyposis.
abstract: OBJECTIVE
  The study assessed compliance of patients with familial adenomatous polyposis (FAP) with endoscopic surveillance.
  
  
  METHODS
  In this nationwide, cross-sectional study, individuals from FAP families registered with the Netherlands Foundation for the Detection of Hereditary Tumours were invited to complete a questionnaire on endoscopic screening experiences.
  
  
  RESULTS
  A total of 328 individuals were eligible for the study of whom 85 were at risk for FAP, 108 had an intact rectum after a colectomy with ileorectal anastomosis (IRA), and 135 had had a pouch following a proctocolectomy with ileoanal anastomosis (IPAA). Based on medical record data, 20% of the at-risk group and 26% of the IRA-group were found to be undercompliant with surveillance advice which was associated significantly with perceived self-efficacy, use of sedatives during surveillance, pain after surveillance and low perceived benefits of surveillance (P < 0.05).
  
  
  CONCLUSIONS
  One in five individuals at risk for FAP and one in four with a retained rectum are undercompliant with screening advice. We recommend that sedatives should be patient-tailored for FAP individuals undergoing surveillance and that adequate pain medication be provided after endoscopy.
authors: Department of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute-Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands.
authors: K F L
authors: KF
authors: Douma
authors: E M A
authors: EM
authors: Bleiker
authors: N K
authors: NK
authors: Aaronson
authors: A
authors: A
authors: Cats
authors: M A
authors: MA
authors: Gerritsma
authors: C M
authors: CM
authors: Gundy
authors: H F A
authors: HF
authors: Vasen
mesh_terms: D011125:Adenomatous Polyposis Coli / Q000523:psychology* / Q000601:surgery; D000328:Adult; D003082:Colectomy; D003113:Colonoscopy; D015179:Colorectal Neoplasms / Q000175:diagnosis / Q000517:prevention & control*; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D010349:Patient Compliance; D020377:Self Efficacy; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires