Skip Navigation LinksHome > September 2013 - Volume 57 - Issue 3 > Health-Related Quality of Life in Children With Intestinal F...
Journal of Pediatric Gastroenterology & Nutrition:
doi: 10.1097/MPG.0b013e3182999961
Original Articles: Gastroenterology

Health-Related Quality of Life in Children With Intestinal Failure

Sanchez, Sabrina E.*; McAteer, Jarod P.*; Goldin, Adam B.*; Horslen, Simon; Huebner, Colleen E.; Javid, Patrick J.*

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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.

© 2013 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology,

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