Description of the DISABKIDS Methodology
The DISABKIDS project is a cooperative effort among experts from different disciplines with experience in HRQoL assessment from different countries (see Figure 1). These countries are France, Germany, the Netherlands, Sweden, Austria, and the United Kingdom. The DISABKIDS project has closely cooperated with a cross-cultural epidemiological project, the KIDSCREEN project that employed the same steps in order to develop a survey instrument on quality of life. The HRQoL instruments are applicable in different national and cultural contexts, comply with quality standards in instrument development, and are practical, i.e. short and easy to use and score. The focus of the DISABKIDS project lies on seven chronic health conditions which are asthma, juvenile rheumatic arthritis, epilepsy, cerebral palsy, diabetes mellitus, atopic dermatitis, and cystic fibrosis.
Participating centres and cooperations of the DISABKIDS project
The DISABKIDS approach followed a methodology which consists of several work phases (work packages) which reflected a stepwise instrument development procedure. The following paragraphs will give a short overview of the aims and methodology of the different work packages