Quality of life and consequences for daily life of familial adenomatous polyposis (FAP) family members

K. F. L. Douma, Eveline M. A. Bleiker, Hans F. A. Vasen, C. M. Gundy, Neil K. Aaronson*

*Corresponding author for this work

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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.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.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.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.? 2011 The Authors. Colorectal Disease ? 2011 The Association of Coloproctology of Great Britain and Ireland.
Original languageEnglish
Pages (from-to)669-677
JournalColorectal Disease
Issue number6
Publication statusPublished - Jun 2011


  • Quality of life
  • adenomatous polyposis coli
  • patient-reported outcomes
  • colorectal neoplasms

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