title: Colorectal cancer surveillance behaviors among members of typical and attenuated FAP families.
abstract: OBJECTIVE
  Although enhanced colorectal surveillance is recommended for members of familial adenomatous polyposis (FAP) families, little is known about individual-level adherence behavior. This study examined factors associated with recent use of colorectal cancer (CRC) surveillance among FAP patients and their at-risk relatives.
  
  
  METHODS
  This cross-sectional study conducted a computer-assisted telephone survey among 150 members of 71 extended families with classic (FAP) or attenuated adenomatous polyposis (AFAP). Participants were enrolled in a university-based hereditary CRC registry or were first-degree relatives of enrollees. Both qualitative and quantitative data were collected and analyzed.
  
  
  RESULTS
  Surveillance behavior varied by disease status. Fifty-four percent of 71 participants with a personal history of FAP and 42% of 79 at-risk relatives reported recent use of CRC surveillance recommendations. In multiple logistic regression analysis, lack of patient recall of provider recommendation for an endoscopic examination of the colon (OR 4.8, 95% CI 1.8-13.1), lack of health insurance or no reimbursement for CRC surveillance (OR 3.6, 95% CI 1.2-10.5), and/or the belief that their relative risk of CRC is not increased (OR 3.1, 95% CI 1.2-7.1) were independently associated with not having had a recent colonoscopy or sigmoidoscopy.
  
  
  CONCLUSIONS
  Despite the known benefits of CRC surveillance, a substantial proportion of FAP family members did not have a recent colonoscopy or endoscopy. Interventions targeted at both clinicians and patients are needed to improve surveillance behavior. These data are also important in designing decision support tools to assist clinicians in identifying and managing high-risk patients.
authors.affiliation: Huntsman Cancer Institute, University of Utah, Salt Lake City, Utah 84112, USA.
authors.forename: Anita Y
authors.initials: AY
authors.lastname: Kinney
authors.forename: Bret
authors.initials: B
authors.lastname: Hicken
authors.forename: Sara E
authors.initials: SE
authors.lastname: Simonsen
authors.forename: Vickie
authors.initials: V
authors.lastname: Venne
authors.forename: Katrina
authors.initials: K
authors.lastname: Lowstuter
authors.forename: Jonathan
authors.initials: J
authors.lastname: Balzotti
authors.forename: Randall W
authors.initials: RW
authors.lastname: Burt
mesh_terms: D011125:Adenomatous Polyposis Coli / Q000175:diagnosis* / Q000235:genetics*; D000328:Adult; D016009:Chi-Square Distribution; D003113:Colonoscopy; D015179:Colorectal Neoplasms / Q000175:diagnosis* / Q000235:genetics*; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D010342:Patient Acceptance of Health Care; D011159:Population Surveillance; D018570:Risk Assessment; D011795:Surveys and Questionnaires