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

Abstract

ObjectiveTo 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).DesignCross-sectional study.SettingEngland.ParticipantsSixty-four CYP with CP aged 10–19 years in Gross Motor Function Classification System (GMFCS) levels I–III.Main outcome measuresMissing 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.ResultsMissing 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.ConclusionThe 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.

Utility estimations of different health states of patients with type I, II, and III spinal muscular atrophy in China: A mixed approach study with patient and proxy-reported data

“…The EQ-5D-Y-3L utility value was on average 0.13 lower than the CHU9D utility value and the result showed CHU9D and EQ-5D-Y-3L had a moderate agreement in SMA patients. Similar results have been proven in a previous study in the population of cerebral palsy ( 42 ). We suggest that these two instruments may not be used inter-changeably to measure and value utility among children and adolescents with SMA.…”

A Comparison of Preference-Based, Generic and Disease-Specific Health-Related Quality of Life in Pediatric Inflammatory Bowel Disease

“…While a strength of this study was comparing different pediatric utility instruments within the same groups of patients, the study did not include additional measures such as the EQ-5DY, a youth version of the EQ-5D ( 25 ), or direct approaches to utility elicitation, such as standard gamble, time trade-off or best-worst scaling. These cognitively complex direct approaches can be challenging to administer in children.…”

The performance of the EQ-5D-Y-5L compared to the EQ-5D-Y-3L in children and adolescents with cerebral palsy (CP)

“…The known-group validity across health condition was further assessed for the median LSS and VAS score across the GMFCS and age groups by Kruskal Wallis and Mann-Whitney U test. It was anticipated that those with higher GMFCS scores would report more problems on EQ-5D-Y dimensions of physical health ( Mobility, Looking After Myself and Usual Activities ) but no difference on dimensions of Pain or Discomfort, Worried, Sad or Unhappy and the VAS general health rating [ 7 , 9 , 41 ].…”

“…Children who have the cognitive ability to self-report should be encouraged to do so on valid and reliable Patient Reported Outcome Measures (PROMs) [ 8 ]. The EQ-5D-Y, Child Utility Index – 9 Dimension (CHU-9D), Health Utility Index (HUI) and Assessment Quality of Life (AQoL) are all preference based PROMs which have been tested in children and adolescent with CP and are of particular interest as they are able to support medical decision making [ 7 , 9 , 10 ]. The EQ-5D-Y and CHU-9D are however the only measures that were developed or adapted for use in children aged between 8-15 years.…”