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

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 associated significantly with HRQOL. This study is the first to compare HRQOL between FAP-patients, at-risk individuals and non-carriers.

Method 
525 individuals (response rate 64%) from 145 families at high-risk for FAP completed a battery of self-reported 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 FAP patients had significantly lower scores on several HRQOL domains compared with at-risk individuals, non-carriers and non-surgically treated FAP-patients. Type of surgery was not associated significantly with HRQOL. Within the surgically treated group, post-surgical complications and comorbidity significantly affected HRQOL. 41% of patients reported that FAP had affected their working life.

Conclusions 
Surgically treated FAP patients have significantly poorer HRQOL than the 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.