Aim: To identify generic measures used to measure quality of life (QoL) in pediatric multiple sclerosis research, estimate an overall score of children and adolescents with pediatric multiple sclerosis, and compare the scores to scores of typically developing children and adolescents.
Method: A systematic search was conducted on four databases. All studies were included if: the sample was children with pediatric demyelinating disorders; self-reported QoL/health-related quality of life (HRQoL) measures or results were reported; and the mean age of the sample was below 21 years. Quality of the included articles was appraised using the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist and the Mixed Methods Appraisal Tool checklist. A meta-analysis was also conducted.
Results: A total of 12 full-text articles were included. Content analysis showed that many components of QoL were not included in the measures. Seven studies were included in the meta-analysis. The meta-analyzed score was 75.7 (95% confidence interval 71.2-80.3) with a pooled standard deviation of 16.6. Scores of typically developing children and children with pediatric multiple sclerosis were similar.
Interpretation: Most measures assessed HRQoL and not QoL. Development of a condition-specific measure of QoL for children and adolescents with pediatric multiple sclerosis would make an important contribution to the field. What this paper adds Health-related quality of life (HRQoL) measures were used to measure quality of life in pediatric multiple sclerosis. HRQoL scores in pediatric multiple sclerosis were similar to typically developing children and adolescents.
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