Back to Search
Start Over
Health-related quality of life in children with intestinal failure
- Source :
- Journal of pediatric gastroenterology and nutrition. 57(3)
- Publication Year :
- 2013
-
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.
- Subjects :
- Male
Short Bowel Syndrome
medicine.medical_specialty
Pediatrics
Cross-sectional study
Health Status
Gastroenterology
Mean difference
Intestinal failure
Internal medicine
Surveys and Questionnaires
medicine
Humans
Intestinal rehabilitation program
Health related quality of life
business.industry
Infant
humanities
Confidence interval
Intestines
Cross-Sectional Studies
Health
Child, Preschool
Pediatrics, Perinatology and Child Health
Quality of Life
Female
business
Family impact
Subjects
Details
- ISSN :
- 15364801
- Volume :
- 57
- Issue :
- 3
- Database :
- OpenAIRE
- Journal :
- Journal of pediatric gastroenterology and nutrition
- Accession number :
- edsair.doi.dedup.....291d1fcf904ce92ff57121aa2ef363e4