How does the EQ-5D-Y Proxy version 1 perform in 3, 4 and 5-year-old children?

Abstract

Background: The EQ-5D-Y Proxy is currently recommended for Health Related Quality of Life (HRQoL) measurement in children aged 4-8 years of age. However, it has only been validated in children over six years of age. The aim of this study was to investigate the performance of the EQ-5D-Y proxy version 1 in children between the ages of 3-6 years. Methods: A sample of 328 children between 3 and 6 years of age were recruited which included children who were either acutely-ill (AI), chronically-ill (CI) or from the general school going population (GP). The EQ-5D-Y Proxy Version 1 and the PedsQL questionnaires were administered at baseline. The EQ-5D-Y Proxy was administered telephonically 24 h later to children with chronic illnesses to establish test-retest reliability. The distribution of dimensions and summary scores, Cohen's kappa, the intraclass correlation coefficient, Pearson's correlation and Analysis of variance were used to explore the reliability, and validity of the EQ-5D-Y for each age group. A single index score was estimated using Latent scores and Adult EQ-5D-3 L values (Dolan). Results: The groups included 3-year olds (n = 105), 4-year olds (n = 98) and 5-years olds (n = 118). The dimension Looking after Myself had the greatest variability between age groups and had the highest rate of problems reported. Worried, Sad or Unhappy and Pain or Discomfort were not stable across time in test-retest analysis. The Visual Analogue Scale (VAS), and single index scores estimated using the latent values and Dolan tariff had good test retest (except for the latent value scores in a small number of 4-year olds). EQ-5D-Y scores for all ages had small to moderate correlations with PedsQL total score. The EQ-5D-Y discriminated well between children with a health condition and the general population for all age groups. Caregivers reported difficulty completing the Looking after Myself dimension due to age-related difficulties with washing and dressing. Conclusion: The dimension of Looking after Myself is problematic for these young children but most notably so in the 3 year old group. If one considers the summary scores of the EQ-5D-Y Proxy version 1 it appears to work well. Known group validity was demonstrated. Concurrent validity was demonstrated on a composite level but not for individual dimensions of Usual Activities or Worried, Sad or Unhappy.. The observable dimensions demonstrated stability over time, with the inferred dimensions (Pain or Discomfort and Worried, Sad or Unhappy) less so, which is to be expected. Further work is needed in exploring either the adaptation of the dimensions in the younger age groups.

Validity and reliability testing of the Toddler and Infant (TANDI) Health Related Quality of Life instrument for very young children

“…As the childhood burden is often highest in resource constrained contexts, there is a clear need for a reliable, valid measure of HRQoL in younger children which is amenable for use in cost utility analysis. The Proxy version of the EQ-5D-Y appeared to perform reasonably well for physical dimensions, with some caveats, in children from three to 5 years of age [ 12 ]. However, there were issues of content validity identified, particularly in the younger age categories with recommendations for changes in dimensions for this age group.…”

Performance of the Toddler and Infant (TANDI) Health-Related Quality of Life Instrument in 3–4-Year-Old Children

“…In a study where pre-school children with a health condition are included with older school-going children or with a longitudinal component into school-going age, the EQ-5D-Y Proxy would be recommended. However, the poor dimension performance of looking after myself, due to the developmental age of the child, as previously reported should be anticipated [37]. The PedsQL would be recommended for studies with typically developing children who report minor health impairments as its sub-scales do not have such a high ceiling effect and the caregiver respondents in this study considered it to describe the health of their child well.…”

“…The TANDI showed improved concurrent validity to the PedsQL than reported for the EQ-5D-Y Proxy [37]. This could be attributed to the fact that the TANDI and PedsQL items are more similar and developmentally appropriate for children aged 3-4 years than the dimensions included in the EQ-5D-Y Proxy.…”

“…It has been previously reported that the EQ-5D-Y Proxy dimensions did not perform as well in children aged 3-4 years as they did in older children [28,37]. This is not surprising as the measure was adapted from the existing adult version.…”

“…The measure is recommended for self-complete in children from age 8 years and proxy completion from 4-7 years [29]. However, there is limited evidence of its performance as a proxy measure in young children [37]. The international protocol for valuation of the EQ-5D-Y has been published [38], and national value sets developed [39,40], but little is known about how the preference-based score will perform in children younger than the recommended age of 8 years.…”