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).


CONCLUSIONS
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.
Burström
Kristina
K
Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institutet, Stockholm, Sweden. kristina.burstrom@ki.se
Egmar
Ann-Charlotte
AC
Lugnér
Anna
A
Eriksson
Margareta
M
Svartengren
Magnus
M
D000293:Adolescent; D000328:Adult; D002648:Child; D004185:Disability Evaluation; D005260:Female; D006304:Health Status; D006801:Humans; D007802:Language; D008297:Male; D010865:Pilot Projects; D011788:Quality of Life; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires; D013548:Sweden