[Development of the German version of EQ-5D-Y-5L to measure health-related quality of life in children and adolescents: Identification of response labels and pilot testing].

OBJECTIVE

EQ-5D-Y-3L is a generic, youth-specific instrument to measure health-related quality of life (HRQoL). It contains five dimensions with three severity levels each. The aim of this study was to identify response levels to extend the German EQ-5D-Y version to four or five severity levels (4L or 5L) and to conduct a pilot test of both versions.

METHODS

In phase 1, we reviewed existing youth-specific HRQoL instruments and conducted focus group interviews with healthy children and adolescents to identify potential new labels. In individual sorting and response scaling interviews, participants aged 8 to 15 years rated the severity of the identified labels. Based on the results, a 4L and a 5L version were developed. In phase 2, the feasibility of those versions was tested in cognitive interviews with healthy children and adolescents as well as those with a health condition.

RESULTS

In phase 1, 12 to 16 labels were identified for each dimension. These were rated by 64 children and adolescents in the sorting and response scaling interviews. The included labels covered different severity levels of health impairments. In phase 2, 88% of the 33 children and adolescents preferred the 5L version as it was easier for them to report on their own health in more detail.

CONCLUSION

Involving the target group of children and adolescents, a German EQ-5D-Y version with five severity levels was developed (EQ-5D-Y-5L) that can be used in children and adolescents aged 8 to 15 years. However, the psychometric properties of the instrument need further investigation. In addition, value sets need to be to developed before the questionnaire is suitable for all fields of application.