Parent-child discrepancy in the assessment of health- related quality of life using the EQ-5D-Y questionnaire.

Abstract

The assessment of health-related quality of life (HRQoL) serves to detect changes over time in patients' health status and allows to do a cost-effectiveness analysis of treatments. When children with special health features cannot perform a self-assessment, it is possible to assess their HRQoL through their parents or caregivers. To date, the discrepancy in the assessment of HRQoL using the EQ-5D-Y questionnaire among children with cerebral palsy (CP) and their parents has not been analyzed. The objective of this study was to analyze the level of agreement in the HRQoL assessment using the EQ-5D-Y questionnaire and its proxy version among children with CP and their parents or caregivers. Children and adolescents with CP, and their parents, from a special education school in the region of Extremadura (Spain) participated in the study. The EQ-5D-Y questionnaire was used for children and the EQ-5D-Y proxy version, for parents. Interviews were conducted in the first quarter of 2015. The level of agreement in the responses was analyzed using the Cohen's kappa coefficient for the five domains of the EQ-5D-Y and the intraclass correlation coefficient for the visual analogue scale. Sixty-two children with CP and mild and/or moderate functional capacity impairment, and their parents, participated in the study. The level of agreement was poor in the HRQoL assessment between children and parents in all the questionnaire domains ( <0.20) and fair or poor ( <0.60) in the visual analogue scale. A high level of parent-child disagreement was observed in the HRQoL assessment in the population with CP using the EQ-5D-Y questionnaire.