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Original research
Comparison of the CHU-9D and the EQ-5D-Y instruments in children and young people with cerebral palsy: a cross-sectional study
  1. Jennifer M Ryan1,2,
  2. Ellen McKay2,
  3. Nana Anokye3,
  4. Marika Noorkoiv1,
  5. Nicola Theis4,
  6. Grace Lavelle5
  1. 1College of Health, Medicine and Life Sciences, Brunel University London, Uxbridge, Middlesex, UK
  2. 2Department of Public Health and Epidemiology, Royal College of Surgeons in Ireland, Dublin, Ireland
  3. 3Health Economics Research Group, Brunel University London, London, Middlesex, UK
  4. 4School of Sport and Exercise, University of Gloucestershire, Cheltenham, Gloucestershire, UK
  5. 5Institute of Psychiatry, King's College London, London, UK
  1. Correspondence to Dr Jennifer M Ryan; jennifer.ryan{at}brunel.ac.uk

Abstract

Objective To compare the performance of the EuroQol 5D youth (EQ-5D-Y) and child health utility 9D (CHU-9D) for assessing health-related quality of life (HRQoL) in children and young people (CYP) with cerebral palsy (CP).

Design Cross-sectional study.

Setting England.

Participants Sixty-four CYP with CP aged 10–19 years in Gross Motor Function Classification System (GMFCS) levels I–III.

Main outcome measures Missing data were examined to assess feasibility. Associations between utility values and individual dimensions on each instrument were examined to assess convergent validity. Associations between utility values and GMFCS level were examined to assess known-group differences.

Results Missing data were <5% for both instruments. Twenty participants (32.3%) and 11 participants (18.0%) reported full health for the EQ-5D-Y and CHU-9D, respectively. There was poor agreement between utilities from the two instruments (intraclass correlation coefficient=0.62; 95% limits of agreement −0.58 to 0.29). Correlations between EQ-5D-Y and CHU-9D dimensions were weak to moderate (r=0.25 to 0.59). GMFCS level was associated with EQ-5D-Y utility values but not CHU-9D utility values.

Conclusion The EQ-5D-Y and CHU-9D are feasible measures of HRQoL in CYP with CP. However, the two instruments demonstrate poor agreement and should not be used to measure and value HRQoL in CYP with CP interchangeably. We propose that the CHU-9D may be preferable to use in this population as it assesses concepts that influence HRQoL among CYP with CP and provides less extreme utility values than the EQ-5D-Y.

  • health economics
  • developmental neurology & neurodisability
  • paediatrics
https://creativecommons.org/licenses/by/4.0/

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Footnotes

  • Contributors JR and GL conceived the study. JR, GL and NA designed the study. GL, JR, MN and NT acquired data. JR, GL and EM performed the analysis. NA contributed to analysis and interpretation of the data. JR, GL and EM drafted the manuscript. NA, MN and NT critically revised the manuscript. All authors approved the final manuscript.

  • Funding Action Medical Research and the Chartered Society of Physiotherapy Charitable Trust have jointly funded this project, and it is supported by a generous grant from The Henry Smith Charity (GN2340).

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval The study was approved by Brunel University London’s College of Health and Life Sciences Research Ethics Committee and the Surrey Borders Research Ethics Committee (ref: 15/LO/0843).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement Data are available upon reasonable request.