A Swedish child-friendly pilot version of the EQ-5D instrument-the development process

Background: Revising existing health related-quality of life (HRQoL) instruments used among adults with the intention of making them child-friendly enables the collection of similar HRQoL data in children, adolescents and adults. The aim of this article is to describe and discuss the development process of a Swedish child-friendly pilot version of the EQ-5D instrument. Methods: We modified the existing Swedish EQ-5D adult version to make it child-friendly. Within a multidisciplinary research group, we investigated linguistic and interpretation issues by performing face-to-face and group interviews with children and adolescents aged 6-17 years. Results: The first modification of the adult language was to change single words into words intelligible to and used by children [e. g. changing 'depression' (depression) into 'ledsen' (sad)]. The second related to whole expressions (using verb-form in the headings of dimensions). Conclusion: The advantage of being able to collect much the same data from children and adolescents, for example in population surveys covering all ages and in chronic childhood diseases, as for adults might outweigh possible disadvantages of modifying existing HRQoL instruments. The Swedish child-friendly EQ-5D pilot version resulting from this development process is further tested for feasibility and construct validity in a clinical interview study; initial results are reported in a subsequent paper.