ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2024
Measuring health-related quality of life in children with suspected genetic conditions: validation of the PedsQL proxy-report versions.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
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Who cites it
4 citing papers in PubMed, 3 citations in OpenAlex.
- Article
- 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
- EuroQol Toddler and Infant Populations (EQ-TIPS): Age-Related Differences in Performance.Children (Basel, Switzerland) · 2024Article
- Physician and informal care use explained by the Pediatric Quality of Life Inventory (PedsQL) in children with suspected genetic disorders.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Article
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Authors and funding
9 authors at 6 institutions in 1 country.
Funding
Abstract
purposeMeasuring health-related quality of life (HRQoL) of children with suspected genetic conditions is important for understanding the effect of interventions such as genomic sequencing (GS). The Pediatric Quality of Life Inventory (PedsQL) is a widely used generic measure of HRQoL in pediatric patients, but its psychometric properties have not yet been evaluated in children undergoing diagnostic GS.
methodsIn this cross-sectional study, we surveyed caregivers at the time of their child's enrollment into GS research studies as part of the Clinical Sequencing Evidence Generating Research (CSER) consortium. To evaluate structural validity of the PedsQL 4.0 Generic Core Scales and PedsQL Infant Scales parent proxy-report versions, we performed a confirmatory factor analysis of the hypothesized factor structure. To evaluate convergent validity, we examined correlations between caregivers' reports of their child's health, assessed using the EQ VAS, and PedsQL scores by child age. We conducted linear regression analyses to examine whether age moderated the association between caregiver-reported child health and PedsQL scores. We assessed reliability using Cronbach's alpha.
resultsWe analyzed data for 766 patients across all PedsQL age group versions (1-12 months through 13-18 years). Model fit failed to meet criteria for good fit, even after modification. Neither age group (categorical) nor age (continuous) significantly moderated associations between PedsQL scores and caregiver-reported child health. Cronbach's alphas indicated satisfactory internal consistency for most PedsQL scales.
conclusionThe PedsQL Generic Core Scales and Infant Scales may be appropriate to measure HRQoL in pediatric patients with suspected genetic conditions across a wide age range. While we found evidence of acceptable internal consistency and preliminary convergent validity in this sample, there were some potential problems with structural validity and reliability that require further attention.
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