ArticleHealth and quality of life outcomes2022
EQ-5D-Y-3L and EQ-5D-Y-5L proxy report: psychometric performance and agreement with self-report.
Article in Health and quality of life outcomes, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 2 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
19 citing papers in PubMed, 2 syntheses or guidelines pooled it, 23 citations in OpenAlex.
- Measurement Properties of the EQ-5D Instruments in Children and Adolescents: A Systematic Review.Applied health economics and health policy · 2025Pooled it
- Are We Agreed? Self- Versus Proxy-Reporting of Paediatric Health-Related Quality of Life (HRQoL) Using Generic Preference-Based Measures: A Systematic Review and Meta-Analysis.PharmacoEconomics · 2022Pooled it
- Health-related quality of life and medication use among individuals with Angelman syndrome.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023Trial
- Validation of proxy-reported EQ-5D-Y-3L in younger children with spinal muscular atrophy: age-related differences in performance.The European journal of health economics : HEPAC : health economics in prevention and care · 2026Article
- Content validity, face validity and comprehensiveness of generic quality-of-life measures in adults and children with rare genetic conditions and their carers: a think aloud qualitative study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Sino-Canadian Healthy Life Trajectories Initiative in China: an economic evaluation protocol.BMJ open · 2026Article
- Carers' interpretation of the recall period and perspective-taking when completing the EQ health and wellbeing instrument (EQ-HWB)-9 as proxies for people with dementia: a think-aloud study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Carer quality of life in Switzerland: a cross-sectional study of parents of children affected by juvenile arthritis.Frontiers in public health · 2026Article
- Comparing the measurement properties of the EQ-5D-Y-3L, EQ-5D-Y-5L and CHU9D in children and adolescents: a measurement property study.The European journal of health economics : HEPAC : health economics in prevention and care · 2025Article
- Validation of EuroQol instruments in paediatric patients and their caregivers in China: protocol for a prospective observational study.BMJ open · 2025Article
- How does a preference-based generic health-related quality of life measure perform in patients with a rare disease? Measurement properties of the EQ-5D-Y proxy version among underage patients with neurofibromatosis type 1.Orphanet journal of rare diseases · 2025Article
- Validity and responsiveness of EQ-5D-Y in children with haematological malignancies and their caregivers.The European journal of health economics : HEPAC : health economics in prevention and care · 2024Article
- Validation of the EQ-5D-Y-5L parent-proxy version among children with juvenile idiopathic arthritis.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Article
- Measurement properties of the EQ-5D-Y-3L, PedsQL 4.0, and PROMIS-25 Profile v2.0 in pediatric patients with spinal muscular atrophy.Health and quality of life outcomes · 2024Article
- An Investigation of Inter-Rater and Intra-Proxy Agreement in Measuring Quality of Life of Children in the Community Using the EQ-5D-Y-3L.PharmacoEconomics · 2024Article
- Long-term distress throughout one's life: health-related quality of life, economic and caregiver burden of patients with neurofibromatosis type 1 in China.Frontiers in public health · 2024Article
- Child-Parent Agreement in the Assessment of Health-Related Quality of Life Using the CHU9D and the PedsQLApplied health economics and health policy · 2023Article
- Development of the Indian Reference Case for undertaking economic evaluation for health technology assessment.The Lancet regional health. Southeast Asia · 2023Review
- Development and validation of a tool for the assessment of benefit from treatment of allergic rhinitis in children and adolescents (PBI-AR-K).Allergy, asthma, and clinical immunology : official journal of the Canadian Society of Allergy and Clinical Immunology · 2022Article
Corrections and comments
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Authors and funding
4 authors at 3 institutions in 2 countries.
Funding
Abstract
backgroundSelf-report is the standard for measuring people's health-related quality of life (HRQoL), including children. However, in certain circumstances children cannot report their own health. For this reason, children's HRQoL measures often provide both a self-report and a proxy-report form. It is not clear whether the measurement properties will be the same for these two forms. We investigated whether it would be beneficial to extend the classification system of the EQ-5D-Y proxy questionnaire from 3 to 5 response levels. The agreement between self-report and proxy-report was assessed for both EQ-5D-Y measures.
methodsThe study included 286 pediatric patients and their caregivers as proxies. At three consecutive measurements-baseline, test-retest and follow-up-the proxies assessed the child's HRQoL using the EQ-5D-Y-3L, EQ-5D-Y-5L, the PedsQL Generic, and matched disease-specific instruments. The proxy versions of EQ-5D-Y-3L and EQ-5D-Y-5L were compared in terms of feasibility, distribution properties, convergent validity, test-retest and responsiveness. Agreement between both EQ-5D-Y proxy versions to their respective self-report versions was assessed at baseline and follow-up.
resultsThe proportion of missing responses was 1% for the EQ-5D-Y-3L and 1.4% for the EQ-5D-Y-5L. The frequency of health state with no problems in all dimensions (11111) was slightly lower for the EQ-5D-Y-5L (21.3% vs 16.7%). Regarding the convergent validity with the PedsQL and disease-specific measures, the proxy versions of EQ-5D-Y-3L and EQ-5D-Y-5L had similar magnitudes of associations between similar dimensions. The means of test-retest coefficients between the two versions of the EQ-5D-Y proxy were comparable (0.83 vs. 0.84). Regarding reported improved conditions, responsiveness of the EQ-5D-Y-5L proxy (26.6-54.1%) was higher than that of the EQ-5D-Y-3L proxy (20.7-46.4%). Except for acutely ill patients, agreement between the EQ-5D-Y-5L proxy and self-reports was at least moderate.
conclusionsExtending the number of levels of the proxy version of EQ-5D-Y can improve the classification accuracy and the ability to detect health changes over time. The level structure of EQ-5D-Y-5L was associated with a closer agreement between proxy and self-report. The study findings support extending the EQ-5D-Y descriptive system from 3 to 5 levels when administered by a proxy, which is often the case in the pediatric population.
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