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Quality of life measures in pediatric multiple sclerosis: a systematic review and meta-analysis
Nikki Ow1,2, Maryam Mozafarinia2,3, Nancy E Mayo1,2,3
1School of Physical and Occupational Therapy, Faculty of Medicine, McGill University, Montreal, QC, Canada.
Insights
Quality of life in pediatric multiple sclerosis is similar to typically developing children, though current measures often focus on health-related aspects rather than overall quality of life.
Area of Science:
- Pediatric Neurology
- Quality of Life Research
Background:
- Pediatric multiple sclerosis (MS) impacts children and adolescents.
- Assessing quality of life (QoL) is crucial for this population.
- Existing generic measures may not fully capture QoL in pediatric MS.
Purpose of the Study:
- Identify generic QoL measures used in pediatric MS research.
- Estimate QoL scores for children and adolescents with pediatric MS.
- Compare these scores to those of typically developing children and adolescents.
Main Methods:
- Systematic literature search across four databases.
- Inclusion criteria: pediatric demyelinating disorders, self-reported QoL/HRQoL, mean age < 21.
- Quality appraisal using STROBE and Mixed Methods Appraisal Tool, followed by meta-analysis.
Main Results:
- Twelve articles were included; content analysis revealed gaps in QoL components assessed.
- Seven studies were included in the meta-analysis.
- The pooled QoL score was 75.7 (95% CI 71.2-80.3); scores were similar between pediatric MS and typically developing groups.
Conclusions:
- Current research predominantly uses health-related quality of life (HRQoL) measures, not comprehensive QoL measures.
- HRQoL scores in pediatric MS are comparable to typically developing peers.
- A condition-specific QoL measure for pediatric MS is needed to advance the field.
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.
