title: Quality of life and consequences for daily life of familial adenomatous polyposis (FAP) family members.
abstract: OBJECTIVE
  The study aimed to document the impact of familial adenomatous polyposis (FAP) on health-related quality of life (HRQOL) and several practical aspects of daily life, and to identify factors significantly associated with HRQOL. This study is the first to compare HRQOL between patients with FAP, at-risk individuals and noncarriers.
  
  
  METHODS
  A total of 525 individuals (response rate 64%) from 145 families at high risk for FAP completed a battery of self-report questionnaires assessing generic- and condition-specific HRQOL and the consequences of FAP for daily life.
  
  
  RESULTS
  HRQOL was comparable to that of the general Dutch population. Surgically treated patients with FAP had significantly lower scores on several HRQOL domains compared with at-risk individuals, noncarriers and nonsurgically treated patients with FAP. Type of surgery was not significantly associated with HRQOL. Within the surgically treated group, postsurgical complications and comorbidity significantly affected HRQOL. Forty-one percent of patients reported that FAP had affected their working life.
  
  
  CONCLUSIONS
  Surgically treated patients with FAP have significantly poorer HRQOL than other groups. The type of surgery and age at time of first surgery were not associated with HRQOL but surgical complications and comorbidity were. Patients should be informed of the consequences of FAP for work and other life domains.
authors.affiliation: Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands.
authors.forename: K F L
authors.initials: KF
authors.lastname: Douma
authors.forename: E M A
authors.initials: EM
authors.lastname: Bleiker
authors.forename: H F A
authors.initials: HF
authors.lastname: Vasen
authors.forename: C M
authors.initials: CM
authors.lastname: Gundy
authors.forename: N K
authors.initials: NK
authors.lastname: Aaronson
mesh_terms: D000203:Activities of Daily Living; D011125:Adenomatous Polyposis Coli / Q000235:genetics / Q000523:psychology* / Q000601:surgery; D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001828:Body Image; D003672:Defecation; D005192:Family Health; D005260:Female; D006579:Heterozygote; D006801:Humans; D016014:Linear Models; D008297:Male; D008875:Middle Aged; D011788:Quality of Life / Q000523:psychology*; D057566:Self Report; D011795:Surveys and Questionnaires; D055815:Young Adult