Factors Associated with Health-Related Quality of Life in Children with Intestinal Failure
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Tissue Engineering of the Intestine in a Murine Model
Published on: December 1, 2012
Victoria C Neam1, Assaf P Oron2, Deepthi Nair1
1Seattle Children's Hospital, Seattle, WA.
Insights
Children with intestinal failure have lower health-related quality of life (HRQOL), especially in school performance, between ages 5-12 years. Developmental delay also impacts HRQOL in these pediatric patients.
Area of Science:
- Pediatric gastroenterology
- Quality of life research
- Child health outcomes
Background:
- Intestinal failure significantly impacts children's well-being.
- Understanding factors affecting health-related quality of life (HRQOL) is crucial for this population.
- Age-related and disease-specific factors require detailed evaluation.
Purpose of the Study:
- To assess disease-specific and age-related factors influencing HRQOL in children with intestinal failure.
- To compare HRQOL in children with intestinal failure to healthy and chronically ill pediatric populations.
Main Methods:
- A prospective study involving 91 children with intestinal failure over six years.
- Annual administration of parent-proxy Pediatric Quality of Life Inventory surveys.
- Analysis using multivariable regression models to identify HRQOL associations.
Main Results:
- HRQOL scores were lowest in children aged 5-7 and 8-12 years, primarily due to school dimension scores.
- Children aged 5 years and older and those with developmental delay showed independently lower HRQOL.
- Patients with intestinal failure scored lower than healthy and chronically ill children at school age.
Conclusions:
- Children with intestinal failure experience diminished HRQOL, particularly in school aspects, during key developmental stages (5-12 years).
- Further multicenter research is necessary to validate these findings.
- Identifying targeted interventions to enhance QOL for children with intestinal failure is essential.
Objective:
To evaluate disease-specific and age-related factors contributing to health-related quality of life (HRQOL). in children with intestinal failure.
Study Design:
A prospective study of HRQOL was performed in a regional intestinal rehabilitation program. Parent-proxy Pediatric Quality of Life Inventory surveys were administered annually to families of 91 children with intestinal failure over a 6-year period. Survey data was stratified by age and compared with pediatric HRQOL data in healthy and chronically ill populations. Linear mixed-effect models using multivariable regression were constructed to identify associations with HRQOL.
Results:
A total of 180 surveys were completed by 91 children and their families. HRQOL scores were lowest for children ages 5-7 years (P < .001) and 8-12 years (P < .01), and these changes were primarily related to school dimension scores. In multivariable regression, age of 5 years and older and developmental delay were independently associated with lower HRQOL scores. The trend toward lower HRQOL scores parallels reference data from healthy and chronically ill children, although patients with intestinal failure scored lower than both populations at school age.
Conclusions:
Children with intestinal failure experience lower parent-proxy HRQOL scores in the 5-7 and 8-12 year age groups primarily related to school dimension scores. Multicenter data to validate these findings and identify interventions to improve QOL for children with intestinal failure are needed.
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