Open AccessHealth‐Related Quality of Life in Children With Intestinal Failure
Author(s) -
Sanchez Sabrina E.,
McAteer Jarod P.,
Goldin Adam B.,
Horslen Simon,
Huebner Colleen E.,
Javid Patrick J.
Publication year - 2013
Publication title -
journal of pediatric gastroenterology and nutrition
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.206
H-Index - 131
eISSN - 1536-4801
pISSN - 0277-2116
DOI - 10.1097/mpg.0b013e3182999961
Subject(s) - medicine , intestinal failure , quality of life (healthcare) , intensive care medicine , pediatrics , parenteral nutrition , nursing
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.