ArticleHealth and quality of life outcomes2020
Item generation for a proxy health related quality of life measure in very young children.
Article in Health and quality of life outcomes, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 papers, 3 of them syntheses that pooled it.
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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.
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Who cites it
34 citing papers in PubMed, 3 syntheses or guidelines pooled it, 49 citations in OpenAlex.
- Benefits and harms of antenatal and newborn screening programmes in health economic assessments: the VALENTIA systematic review and qualitative investigation.Health technology assessment (Winchester, England) · 2024Pooled it
- Systematic Review of the Psychometric Performance of Generic Childhood Multi-attribute Utility Instruments.Applied health economics and health policy · 2023Pooled it
- Systematic Review of Conceptual, Age, Measurement and Valuation Considerations for Generic Multidimensional Childhood Patient-Reported Outcome Measures.PharmacoEconomics · 2022Pooled it
- Using Parent Target Problem Narratives to Evaluate Outcomes in Children with Autism Spectrum Disorder.Research on child and adolescent psychopathology · 2021Trial
- Multinational stakeholder engagement to inform future development and refinement of the EuroQol toddler and infant populations (EQ-TIPS).The European journal of health economics : HEPAC : health economics in prevention and care · 2026Article
- Article
- 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
- Comparison of the psychometric performance of experimental EuroQol Toddler and Infant Populations Instrument (EQ-TIPS) and Pediatric Quality of Life Inventory™ (PedsQL) in young children.The European journal of health economics : HEPAC : health economics in prevention and care · 2026Article
- Developing the EuroQol toddler and infant populations (EQ-TIPS) instrument: qualitative analysis of expert views on content validity and conceptual challenges.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Chronic sequelae and owner burdens are common following canine intervertebral disc disease.The Veterinary record · 2025Article
- Article
- Understanding data visualization techniques in qualitative studies used to develop and validate patient-reported outcome measures: a targeted literature review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Review
- Article
- Health-related quality of life in children with presumptive TB.IJTLD open · 2024Article
- Measuring health-related quality of life in a Chinese Mainland adolescent population: psychometric properties of the Mandarin Chinese self-reported KIDSCREEN-27 and KIDSCREEN-10 index.BMC psychology · 2024Article
- An item bank to measure health-related quality of life among young children (0-5-years-old) affected by respiratory illnesses - expert stakeholders and end-users from the Western Cape, South Africa.Health and quality of life outcomes · 2024Article
- Psychometric Properties of Child Health Utility 9D (CHU9D) Proxy Version Administered to Parents and Caregivers of Children Aged 2-4 Years Compared with Pediatric Quality of Life Inventory™ (PedsQL).PharmacoEconomics · 2024Article
- Psychometric Performance Comparison of the Adapted versus Original Versions of the EQ-5D-Y-3L and -Y-5L in Proxy Respondents for 2- to 4-Year-Olds.PharmacoEconomics · 2024Article
- Portuguese Validation of the TAPQoL: A Health-Related Quality of Life Instrument for Children Aged 0-6 Years.European journal of investigation in health, psychology and education · 2024Article
- A cost-effectiveness analysis of a universal, preventative-focused, parent and infant programme.BMC health services research · 2024Article
Corrections and comments
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Authors and funding
3 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
BACKGROUND AND
aimsVery young children have a relatively high prevalence of morbidity and mortality. Health care and supportive technology has improved but may require difficult choices and decisions regarding the allocation of these resources in this age group. Cost-effective analysis (CEA) can inform these decisions and thus measurement of Health-Related Quality of Life (HRQoL) is becoming increasingly important. However, the components of HRQoL are likely to be specific to infants and young children. This study aimed to develop a bank of items to inform the possible development of a new proxy report instrument.
methodsA review of the literature was done to define the concepts, generate items and identify measures that might be an appropriate starting point of reference. The items generated from the cognitive interviews and systematic review were subsequently pruned by experts in the field of HRQoL and paediatrics over two rounds of a Delphi study.
resultsBased on the input from the different sources, the greatest need for a new HRQoL measure was in the 0-3-year age group. The item pool identified from the literature consisted of 36 items which was increased to 53 items after the cognitive interviews. The ranking of items from the first round of the Delphi study pruned this pool to 28 items for consideration. The experts further reduced this pool to 15 items for consideration in the second round. The experts also recommended that items could be merged due to their similar nature or construct. This process allowed for further reduction of items to 11 items which showed content validity and no redundancy.
conclusionThe need for an instrument to measure appropriate aspects of HRQoL in infants and young children became apparent as items included in existing measures did not cover the required spectrum. The identification of the final items was based on a sound conceptual model, acceptability to stakeholders and consideration of the observability of the item selected. The pruned item bank of 11 items needs to be subject to further testing with the target population to ensure validity and reliability before a new measure can be developed.
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