EQ-5D-Y as a health-related quality of life measure in children and adolescents with functional disability in Sweden: testing feasibility and validity

Abstract

Aim: The EQ-5D-Y is a newly developed generic instrument measuring health-related quality of life in children and adolescents. The aim of the study was to test the feasibility and validity of the EQ-5D-Y in a Swedish patient sample of children and adolescents with functional motor, orthopaedic and medical disabilities and to compare the results with a general population sample.

Methods: Two samples of children and adolescents answered the EQ-5D-Y and a core set of internationally standardised instruments, variables and socio-demographic questions. Patients with functional disability (n = 71, aged seven to 17 years) and individuals from the general population (n = 407, aged eight to 16 years) were included in this study.

Results: There was a low number of missing answers. Significantly more problems were reported in all dimensions in the patient sample, and the mean visual analogue scale (VAS) score was significantly lower. Any problems were reported by 83% of the patients and by 37% of the general population. In the patient sample, 21% reported problems at the most severe level, compared with 1.5% in the general population sample. By subgroup analyses by diagnoses, the frequency of reported problems in the different dimensions varied.

Conclusion: Even though feasibility and discriminative validity of the EQ-5D-Y were supported in our study, further studies are needed including more patients and patient groups.