Quality of life measures in pediatric multiple sclerosis: a systematic review and meta‐analysis

Abstract

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. 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.

Çocukluk çağı başlangıçlı multipl skleroz hastalarında öz yeterlilik ve sağlıkla ilişkili yaşam kalitesinin değerlendirilmesi

“…The HRQoL evaluated in our study showed the mean score of 66.5±16.2. In the validation and reliability study of Turkish PedsQL for adolescents aged 13 to 18 years, the mean PedsQL score of patients with chronic diseases was 74.82 and a recent systematic review and meta-analysis in POMS patients using PedsQL, reported mean HRQoL scores as 67.3-82.4 (15). The mean PedsQL score of our POMS patients was in the lower range of those reported in this meta-analysis.…”

Assessment of Quality of Life for Multiple Sclerosis among Adolescents

“…Many organizations, e.g., the European Medicines Agency, emphasize the need to assess HRQOL in patients with chronic diseases. The effect of the disease on the quality of life (QoL) of children has been demonstrated in various chronic diseases such as cancer, rheumatic diseases, asthma, diabetes mellitus, neurological diseases including neurosurgical patients, fibromyalgia, demyelinating diseases, spinal muscular atrophy, cerebral palsy, or epilepsy (Ow et al, 2021).…”

Patient perspectives in pediatric neurology: a critical shift in the paradigm of outcome measurement

“…To support comprehensive evidence‐based recommendations for selecting the most suitable PROM for a given purpose, the Consensus‐based Standards for the selection of Health Measurement INstruments (COSMIN) initiative developed methodological standards for studies by selecting a minimum core set of outcomes that should be measured and reported in all clinical trials of a specific condition or trial population 16 . Systematic reviews are available for many neurologically‐based conditions: muscular dystrophy, 48,49 autism spectrum disorder, 50 child disability, 51 epilepsy, 42,52 survivors of brain tumour and other acquired brain injuries, 53 and pediatric multiple sclerosis 54 . The Core Outcome Measures in Effectiveness Trials are seeking consensus on what is important and meaningful to measure and are available for antiepileptic therapy in pediatric epilepsy 55 .…”

“…16 Systematic reviews are available for many neurologically-based conditions: muscular dystrophy, 48,49 autism spectrum disorder, 50 child disability, 51 epilepsy, 42,52 survivors of brain tumour and other acquired brain injuries, 53 and pediatric multiple sclerosis. 54 The Core Outcome Measures in Effectiveness Trials are seeking consensus on what is important and meaningful to measure and are available for antiepileptic therapy in pediatric epilepsy. 55 Core set outcome domains are available for tube-fed children with neurological impairments.…”