ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2020
Health-related quality of life in neonates and infants: a conceptual framework.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 1 of them a synthesis that pooled it.
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Who cites it
11 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Mediating effect of post-stroke depression between activities of daily living and health-related quality of life: meta-analytic structural equation modeling.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023Pooled it
- 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
- 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
- Development and Evaluation of an Evidence-Based Management Indicator System for Transitional Care in Preterm Infants Using a Delphi and AHP Approach.Journal of nursing management · 2026Article
- Exposure to clinical stressors during NICU admission in preterm infants.European journal of pediatrics · 2025Article
- EuroQol Toddler and Infant Populations (EQ-TIPS): Age-Related Differences in Performance.Children (Basel, Switzerland) · 2024Article
- Meeting the Challenges of Preference-Weighted Health-Related Quality-of-Life Measurement in Children.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
- Article
- A comparison of the Child Health Utility 9D and the Health Utilities Index for estimating health utilities in pediatric inflammatory bowel disease.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023Article
- The Challenges of Measuring and Valuing Quality of Life in Preschool Children: A Retrospective Review of NICE Appraisals.Children (Basel, Switzerland) · 2021Article
Corrections and comments
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Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeWith reduced mortality of neonatal conditions, health-related quality of life (HRQOL) has become an important clinical outcome. However, since the meaning of HRQOL in dependent, non-autonomous infants and neonates remains largely undefined, HRQOL measurement and economic evaluation are limited due to the lack of age-specific methodology. The objective was to construct a conceptual framework of neonatal and infant HRQOL (NIHRQOL) which identifies factors relevant to the neonate and infant, their relationship with each other and the caregiving environment.
methodsUsing qualitative methods, a concept was developed based on in-depth analysis of verbatim records of two focus groups (6 caregivers, 6 healthcare providers) and five interviews with caregivers of chronically ill neonates/infants (n = 2), and healthcare professionals of a pediatric tertiary healthcare center (n = 3). Two analysts independently performed thematic analysis using an inductive and contextual approach.
resultsThe majority of participants regarded NIHRQOL as an individual entity, which was closely related and strongly influenced by caregivers and family. It may be gauged by the perceived degree of effort required to achieve expected normalcy in everyday life for the neonate/infant and its family. The importance of individual HRQOL factors is developmental stage-dependent.
conclusionNeonatal and infant HRQOL is a multidimensional, multilayered and interconnected concept, where the child's needs contribute most directly, and the caregiver's and society's ability to meet those needs characterize the interdependence between the child and its caregiving environment. Developmental stage-specific HRQOL instruments for premature and mature neonates, and infants are warranted to allow for valid HRQOL measurement.
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