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Published on: December 1, 2012
Health-related quality of life in children with intestinal failure
Sabrina E Sanchez1, Jarod P McAteer, Adam B Goldin
1Division of Pediatric General and Thoracic Surgery, Seattle Children's Hospital, Seattle, WA 98145-5005, USA.
Insights
Children with intestinal failure (IF) experience lower health-related quality of life (HRQOL) compared to healthy peers. Current tools like the PedsQL may not fully capture the impact of IF on these children and their families.
Area of Science:
- Pediatric Gastroenterology
- Quality of Life Research
- Child Health Outcomes
Background:
- Survival rates for children with intestinal failure (IF) have improved.
- Limited data exist on the health-related quality of life (HRQOL) for these children.
- Existing HRQOL assessments may not adequately capture the unique challenges faced by children with IF.
Purpose of the Study:
- To evaluate the HRQOL of children with IF.
- To compare the HRQOL of children with IF to that of healthy children.
- To assess the suitability of current HRQOL tools for this population.
Main Methods:
- Cross-sectional study utilizing the PedsQL 4.0 Generic Core Scales and Family Impact Module.
- Parent proxy-report questionnaires administered to parents of children in an outpatient intestinal rehabilitation program.
- Inclusion of open-ended questions to gather feedback on questionnaire suitability.
Main Results:
- Parents reported significantly lower HRQOL scores for children with IF aged 1-6 years compared to healthy norms.
- HRQOL scores for infants under 1 year were also lower, though not statistically significant.
- No demographic or clinical factors were associated with HRQOL.
- 65% of parents felt the PedsQL did not fully address the effects of IF.
Conclusions:
- Children with IF and their families experience a diminished HRQOL.
- The PedsQL survey may not be comprehensive enough for this population.
- A disease-specific HRQOL module or questionnaire is recommended for better assessment in children with IF.
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.
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