ReviewJournal of market access & health policy2019
Measuring the health-related quality of life in young children: how far have we come?
Review in Journal of market access & health policy, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 63 papers, 6 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
63 citing papers in PubMed, 6 syntheses or guidelines pooled it.
- Investigating the therapeutic profile of velaglucerase alfa in paediatric patients with Gaucher disease: a systematic review across all paediatric age groups.Orphanet journal of rare diseases · 2026Pooled it
- A comprehensive systematic review of health-related quality of life measures in short stature paediatric patients.Endocrine · 2024Pooled it
- Non-invasive positive pressure ventilation for acute asthma in children.The Cochrane database of systematic reviews · 2024Pooled it
- Pooled it
- Dravet syndrome: A systematic literature review of the illness burden.Epilepsia open · 2023Pooled it
- Neurocognitive functioning and health-related quality of life of children after pediatric intensive care admission: a systematic review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2022Pooled it
- The cost-effectiveness of a proportionate parenting programme for primary caregivers and their child: an economic evaluation using evidence from the E-SEE Trial.BMC health services research · 2022Trial
- Health-Related Quality of Life in Pediatric Hepatic Glycogen Storage Disease: A Dual-Perspective Study.Nutrients · 2026Article
- Impact of idiopathic short stature on children's well-being: a nationwide study of short Danish children.Journal of the Endocrine Society · 2026Article
- Impact of inactivated influenza vaccination on health-related quality of life for young children using Japanese experimental EuroQol toddler and infant populations (EQ-TIPS) v2.0.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Measuring health-related quality of life in infants and toddlers: conceptual challenges and proposed recommendations.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Measurement of the impact of giant cell arteritis and treatment with glucocorticoids on health-related quality of life.Therapeutic advances in musculoskeletal disease · 2026Review
- Psychometric comparison of CHU9D and PedsQL 4.0 proxy version administered to parents of children with congenital colorectal conditions in Australia.The European journal of health economics : HEPAC : health economics in prevention and care · 2025Article
- Proxy reporting in health: a scoping review of instructions, perspectives, and reporting experiences.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Young children (6-7 years) can meaningfully participate in cognitive interviews assessing comprehensibility in health-related quality of life domains: a qualitative study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Quality of Life after Brain Injury in children aged six and seven years (QOLIBRI-KIDDY) - development and scale analysis of the first disease-specific self-report instrument for young children after traumatic brain injury.Journal of patient-reported outcomes · 2025Article
- Lung life HRQoL measure: psychometric properties and initial data in presumptive TB.IJTLD open · 2025Article
- Article
- Translation, adaptation, and psychometric evaluation of the Quality of Life in a Child's Chronic Disease Questionnaire for the Swedish context.European journal of pediatrics · 2024Article
- Sleep Problems and Quality of Life in Children with Epilepsy Without Neurodevelopmental Disorders.Journal of clinical medicine · 2024Article
3 more citing papers are in PubMed but not listed here.
Corrections and comments
- Erratum issuedCorrection.2019
Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The importance of understanding the impact of disease and treatment on children's Health-Related Quality of Life (HRQoL) has given rise to an increasing use of child self-report and observer or proxy instruments. In this article, we review the status quo and challenges of HRQoL measurement specific to children under five. A number of HRQoL questionnaires exist for use with children and/or proxies, and both guidelines and reviews have been published on paediatric HRQoL. However, none address the challenges of measurement for children under five, for whom proxy measures should be used. In reality, there is significant heterogeneity in the cut-off age for self-report questionnaires. Recommendations are that proxies should be used for observable concepts, but not for concepts that require interpretation. Some research has been undertaken on dimensions/concepts in paediatric HRQoL questionnaires. However, no HRQoL models have been developed specifically for children, and heterogeneity in questionnaire dimensions underlines that there is no clear grasp of what HRQoL means in paediatric populations. There is a need to carry out research in order to develop theoretical models of HRQoL that are specific to children at different developmental stages, in order to evaluate and support new and existing measures for paediatric HRQoL and their use in clinical practice as well as clinical trials.
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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.