ArticleDevelopmental medicine and child neurology2020
Generic preference-based health-related quality of life in children with neurodevelopmental disorders: a scoping review.
Article in Developmental medicine and child neurology, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 3 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
13 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- A Systematic Review of Methods and Practice for Integrating Maternal, Fetal, and Child Health Outcomes, and Family Spillover Effects into Cost-Utility Analyses.PharmacoEconomics · 2024Pooled it
- Outcome measures for economic evaluations and cost-effectiveness analyses of interventions for people with intellectual disabilities: A methodological systematic review.Journal of applied research in intellectual disabilities : JARID · 2023Pooled it
- Patient-reported outcome measures used to improve youth mental health services: a systematic review.Journal of patient-reported outcomes · 2023Pooled it
- Economic Evaluation of Interventions for Children with Neurodevelopmental Disorders: Practical Guidance.PharmacoEconomics · 2026Review
- Exploring the Potential and Challenges of Digital and AI-Driven Psychotherapy for ADHD, OCD, Schizophrenia, and Substance Use Disorders: A Comprehensive Narrative Review.Indian journal of psychological medicine · 2026Review
- Data-Related and Methodological Challenges in Assessing the Cost-Effectiveness of Traditional and Genomic Newborn Screening Programs.Applied health economics and health policy · 2026Review
- Generic health-related quality of life instruments among children and adolescents in low- and middle-income countries: a scoping review.Systematic reviews · 2026Article
- 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
- Article
- The High Rates of Comorbidity among Neurodevelopmental Disorders: Reconsidering the Clinical Utility of Distinct Diagnostic Categories.Journal of personalized medicine · 2024Review
- Early intervention for young children with autism spectrum disorder: protocol for a scoping review of economic evaluations.Systematic reviews · 2021Article
- The cost-effectiveness of screening tools used in the diagnosis of fetal alcohol spectrum disorder: a modelled analysis.BMC public health · 2019Article
- Health State Utilities in Children and Adolescents With Osteochondritis Dissecans of the Knee.Orthopaedic journal of sports medicine · 2019Article
Corrections and comments
- Commented on by
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
aimTo describe how generic preference-based health-related quality of life (HRQoL) instruments have been used in research involving children with neurodevelopmental disorders (NDD).
methodA systematic search of nine databases identified studies that used generic preference-based HRQoL instruments in children with NDD. Data extracted following the Preferred Reporting Items for Systematic Review and Meta-Analyses extension for Scoping Review guidelines included type of NDD, instrument used, respondent type, justification, and critical appraisal for these selections.
resultsThirty-six studies were identified: four cost-utility analyses; 15 HRQoL assessments; five economic burden studies; three intervention studies; and nine 'other'. The Health Utilities Index (Mark 2 and Mark 3) and EuroQoL 5D (EQ-5D; three-level EQ-5D, five-level EQ-5D, and the youth version of the EQ-5D) instruments were most frequently used (44% and 31% respectively). The relatively low use of these instruments overall may be due to a lack of psychometric evidence, inconsistency in justification for and lack of clarity on appropriate respondent type and age, and geographical challenges in applying preference weights.
interpretationThis study highlights the dearth of studies using generic preference-based HRQoL instruments in children with NDD. The use of cost-utility analysis in this field is limited and validation of these instruments for children with NDD is needed. The quality of data should be considered before guiding policy and care decisions. WHAT THIS PAPER ADDS: Limited use of generic preference-based health-related quality of life (HRQoL) instruments in studies on children with neurodevelopmental disorders. Only 11% of studies were cost-utility analyses. Inconsistencies in justification for choosing generic preference-based HRQoL instruments and respondent types.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
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.