SynthesisDevelopmental medicine and child neurology2016
Measurement properties of multidimensional patient-reported outcome measures in neurodisability: a systematic review of evaluation studies.
Synthesis in Developmental medicine and child neurology, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 3 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
20 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Epilepsy-specific patient-reported outcome measures of children's health-related quality of life: A systematic review of measurement properties.Epilepsia · 2020Pooled it
- A review of preference-based measures for the assessment of quality of life in children and adolescents with cerebral palsy.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2018Pooled it
- Pooled it
- Beyond benchmarks: a narrative review of evolving quality of life frameworks for children with neurodevelopmental and learning disabilities and the need for integrated digital twin approaches.Frontiers in public health · 2026Review
- Psychometric evaluation of the EQ-5D-Y-3L in Ethiopian pediatric inpatients: comparing self and proxy reports.Journal of patient-reported outcomes · 2025Article
- Psychometric properties of the Pediatric Evaluation of Disability Inventory - Patient Reported Outcome: A cognitively accessible measure of functional performance.Developmental medicine and child neurology · 2025Article
- A Scoping Review of Mental Health and Wellbeing Outcome Measures for Children and Young People: Implications for Children in Out-of-home Care.Journal of child & adolescent trauma · 2024Article
- Article
- Quality of life beyond diagnosis in intellectual disability - Latent profiling.Research in developmental disabilities · 2022Article
- Measuring Health-Related Quality of Life in Pediatric Neurology.Journal of child neurology · 2020Review
- Assessing quality of life in psychosocial and mental health disorders in children: a comprehensive overview and appraisal of generic health related quality of life measures.BMC pediatrics · 2020Review
- Systematic review: measurement properties of patient-reported outcome measures evaluated with childhood brain tumor survivors or other acquired brain injury.Neuro-oncology practice · 2020Article
- How does the EQ-5D-Y Proxy version 1 perform in 3, 4 and 5-year-old children?Health and quality of life outcomes · 2020Article
- Generic preference-based health-related quality of life in children with neurodevelopmental disorders: a scoping review.Developmental medicine and child neurology · 2020Article
- Transition from child-centred to adult-oriented healthcare systems for young people with neurodisability: a scoping review protocol.HRB open research · 2020Article
- Patterns, trends and methodological associations in the measurement and valuation of childhood health utilities.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2019Review
- Producing a preference-based quality of life measure for people with Duchenne muscular dystrophy: a mixed-methods study protocol.BMJ open · 2019Article
- Predictors of self-reported health-related quality of life according to the EQ-5D-Y in chronically ill children and adolescents with asthma, diabetes, and juvenile arthritis: longitudinal results.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2018Article
- Economic Evaluation of Interventions for Children with Neurodevelopmental Disorders: Opportunities and Challenges.Applied health economics and health policy · 2017Article
- Article
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7 authors.
Funding
Abstract
aimTo identify and appraise the quality of studies that primarily assessed the measurement properties of English language versions of multidimensional patient-reported outcome measures (PROMs) when evaluated with children with neurodisability, and to summarize this evidence.
methodMEDLINE, Embase, PsycINFO, CINAHL, AMED, and the National Health Service Economic Evaluation Database were searched. The methodological quality of the papers was assessed using the COnsensus-based Standards for selection of health Measurement INstruments checklist. Evidence of content validity, construct validity, internal consistency, test-retest reliability, proxy reliability, responsiveness, and precision was extracted and judged against standardized reference criteria.
resultsWe identified 48 studies of mostly fair to good methodological quality: 37 papers for seven generic PROMs (CHIP, CHQ, CQoL, KIDSCREEN, PedsQL, SLSS, and YQOL), seven papers for two chronic-generic PROMs (DISABKIDS and Neuro-QOL), and four papers for three preference-based measures (HUI, EQ-5D-Y, and CHSCS-PS).
interpretationOn the basis of this appraisal, the DISABKIDS appears to have more supportive evidence in samples of children with neurodisability. The overall lack of evidence for responsiveness and measurement error is a concern when using these instruments to measure change, or to interpret the findings of studies in which these PROMs have been used to assess change.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.