The generation of items for the KIDSCREEN questionnaire consisted of three steps: literature review, delphi method and focus groups. Afterwards the amount of items was reduced to form a draft questionnaire for pilot testing.
In order to acquire an overview of the literature, particularly of instruments that have dealt with HRQoL in children and focused on international or cross-cultural research, a computer search was conducted using the MEDLINE data bases. Literature published from 1985 to 2000 was searched. Altogether 9.029 abstracts met the search criteria and were reviewed to identify dimensions of HRQoL in children and adolescents.
A Delphi exercise was conducted to identify the conceptualisation and operationalisation of HRQOL in children and adolescents from an expert perspective. The Delphi process for the KIDSCREEN project consisted of three rounds of questionnaires administered to a multidisciplinary group of 24 experts from 7 European countries. Agreement was reached that the new instrument should be a multidimensional profile measure with 30-49 items covering 5 to 8 dimensions, and taking 10-15 minutes to complete. Agreement was also reached on 8 specific dimensions to be included in the questionnaire: psychological (well-being, self-esteem, body image, cognitive functioning), physical (mobility, energy/vitality), social (social relations, family/home functioning) and other possible dimensions, for instance environment.
The aim of the focus groups was to take the perspective of children and adolescents across Europe into account in the development of the statements in the questionnaire. Focus groups consisting of 4 to 6 children were conducted throughout Europe. In addition, focus groups with parents and professionals were carried out as well as in-depth interviews with some children. The focus groups were divided in separate gender and age groups. Standardised operating procedures ensured the compatibility of the results. The group discussions were content analysed. The aims of the focus groups were to identify dimensions and items by exploring the meaning of quality of life and well-being for the participants. Furthermore, the aim was to estimate the impact of health problems and evaluate the lay-out and answering categories of generic quality of life questionnaires available for children and adolescents.
Altogether 2505 statements were formulated as a result of the focus group work. The statements underwent a reduction process involving a redundancy rating performed by three centres and a card sorting procedure. Finally, 185 items clustered into 7 Dimensions and 24 categories were selected to form the draft questionnaire of the pilot test. The draft questionnaire used a five point response format for frequency and intensity and a timeframe of one week.