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

• Published in: Colorectal disease Vol. 13; no. 6; pp. 669 - 677
• Main Authors: Douma, K. F. L., Bleiker, E. M. A., Vasen, H. F. A., Gundy, C. M., Aaronson, N. K.
• Format: Journal Article
• Language: English
• Published: Oxford, UK Blackwell Publishing Ltd 01.06.2011
• Subjects: Activities of Daily Living; adenomatous polyposis coli; Adenomatous Polyposis Coli - genetics; Adenomatous Polyposis Coli - psychology; Adenomatous Polyposis Coli - surgery; Adolescent; Adult; Aged; Aged, 80 and over; Body Image; colorectal neoplasms; Defecation; Family Health; Female; Heterozygote; Humans; Linear Models; Male; Middle Aged; patient-reported outcomes; Quality of life; Quality of Life - psychology; Self Report; Surveys and Questionnaires; Young Adult
• ISSN: 1462-8910; 1463-1318
• DOI: 10.1111/j.1463-1318.2010.02275.x

Aim  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. Method  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. Conclusion  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.