School of Physical and Occupational Therapy, Faculty of Medicine, McGill University, Montreal, QC, Canada.
Center for Outcomes Research and Evaluation (CORE), The Research Institute of the McGill University Health Center (RI-MUHC), Montreal, QC, Canada.
Dev Med Child Neurol. 2021 Sep;63(9):1051-1058. doi: 10.1111/dmcn.14870. Epub 2021 Mar 26.
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.
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.
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.
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.
确定用于衡量儿科多发性硬化症研究中生活质量（QoL）的通用指标，评估儿科多发性硬化症儿童和青少年的总体得分，并将该得分与典型发育中的儿童和青少年的得分进行比较。
对四个数据库进行了系统搜索。如果符合以下标准，则将所有研究都纳入：样本为患有儿科脱髓鞘疾病的儿童；报告了自我报告的 QoL/健康相关生活质量（HRQoL）指标或结果；且样本的平均年龄低于 21 岁。使用《观察性研究的报告质量评估工具》（STROBE）检查表和《混合方法评估工具》检查表对纳入文章的质量进行评估。还进行了荟萃分析。
共纳入 12 篇全文文章。内容分析表明，许多 QoL 指标并未包含在这些指标中。有 7 项研究纳入荟萃分析。荟萃分析的得分为 75.7（95%置信区间 71.2-80.3），合并标准差为 16.6。典型发育儿童和儿科多发性硬化症儿童的得分相似。
大多数评估方法都评估了 HRQoL，而不是 QoL。为儿科多发性硬化症儿童和青少年开发一种特定于疾病的 QoL 评估方法将对该领域做出重要贡献。本文的附加信息：使用健康相关生活质量（HRQoL）指标来衡量儿科多发性硬化症的生活质量。儿科多发性硬化症的 HRQoL 得分与典型发育中的儿童和青少年相似。
