Comparison of the CHU-9D and the EQ-5D-Y instruments in children and young people with cerebral palsy: a cross-sectional study ; A comparison of the CHU-9D and the EQ-5D-Y instruments in adolescents with cerebral palsy

Data availability statement: Data are available upon reasonable request. ; Copyright © Author(s) (or their employer(s)) 2020. 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. ; Action Medical Research and the Chartered Society of Physiotherapy Charitable Trust; The Henry Smith Charity (GN2340).