Child self-reported quality of life in pediatric intestinal failure
| Autor: | Simon Horslen, Anna V. Faino, Patrick J. Javid, Victoria C. Neam, Melissa Wong |
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| Rok vydání: | 2021 |
| Předmět: |
Parents
Pediatrics medicine.medical_specialty business.industry Child age General Medicine humanities Intestinal Failure Quality of life Age groups Intestinal failure Child Preschool Surveys and Questionnaires Pediatrics Perinatology and Child Health Chronic Disease medicine Quality of Life Humans Surgery Intestinal rehabilitation program Prospective Studies Self Report business Prospective cohort study Child |
| Zdroj: | Journal of pediatric surgery. 57(9) |
| ISSN: | 1531-5037 |
| Popis: | Recent studies have focused on parent-reported health-related quality of life (HRQOL) in children with intestinal failure (IF). However, there is a paucity of data on HRQOL from the perspective of the child with IF.A prospective study of child self-reported HRQOL was performed in a regional intestinal rehabilitation program from 2015 to 2019. The PedsQL 4.0 Generic Core Scales were administered annually to children with IF ages five years and older along with their parents. Survey data was stratified by age and compared with parent-proxy scores and reference populations of healthy and chronically ill children. Linear mixed-effect models were constructed to identify associations with child self-reported HRQOL.A total of 140 surveys were administered to 69 children and their parents. Median child age at survey was 8 (IQR 6-10) years. Child self-reported HRQOL scores increased with each increasing age range. Children reported higher HRQOL scores compared to parent-proxy data in all age groups. Children with IF had lower HRQOL scores compared to healthy children in all survey dimensions (p 0.001) and to children with chronic illness in the school and social functioning dimensions (p 0.05). In adjusted analysis, longer remnant bowel length was independently associated with decreased HRQOL scores in children (p 0.05).Children with IF reported better HRQOL compared to parent-proxy data. While these HRQOL scores improved with age, they remain significantly lower than healthy and chronically ill peers. The association between bowel length and child-reported HRQOL deserves further investigation.Level II. |
| Databáze: | OpenAIRE |
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