Health‐Related Quality of Life in Children With Intestinal Failure

ABSTRACT Objectives: Survival of infants with intestinal failure (IF) has increased in the past decade; however, data on their health‐related quality of life (HRQOL) are lacking. We hypothesized that HRQOL would be lower among children with IF compared with that of healthy children. Methods: We performed a cross‐sectional study of the HRQOL of children enrolled in the outpatient intestinal rehabilitation program at Seattle Children's Hospital using the PedsQL 4.0 Generic Core Scales parent proxy‐report and the Family Impact Module questionnaires. Parents were asked 2 open‐ended questions pertaining to the suitability and completeness of the PedsQL to assess their and their child's HRQOL. Results: Parents of 23 children with IF completed the questionnaires. Compared with norms for healthy children, parents reported significantly lower total PedsQL scores for children ages 1 to 2 years (mean difference −13.16, 95% confidence interval [CI] −21.86 to −4.46; P = 0.003) and 2 to 6 years (mean difference −15.57, 95% CI −22.66 to −8.48; P < 0.001). Scores were also lower for children younger than 1 year (mean difference −6.43, 95% CI −13.93 to 1.07), although this test was not statistically significant. No measured demographic or clinical characteristics were associated with HRQOL. The majority of parents (65%) said the PedsQL failed to address important effects of IF on children and their families. Conclusions: Children with IF and their parents have a decreased HRQOL compared with healthy children as measured by the PedsQL survey. A disease‐specific module or separate HRQOL questionnaire is needed for a more comprehensive assessment of HRQOL in children with IF.