DISABKIDS is a European project which aims at enhancing the quality of life and the independence of children with chronic health conditions and their families. Central to this pursuit is the development of a set of health related quality of life (HRQoL) questionnaires that are standardised for the whole of Europe. These new instruments will assess quality of life from the child's perspective in terms of their physical, mental and social well being.
The DISABKIDS project funded by the European Commission within the Fifth Framework Programme (FP5) is part of the Quality of Life and Management of Living Resources programme. The programme is built around six specific key actions and additional generic activities. The DISABKIDS project is localized within the generic activity "Disability" and cooperates with its sister-project KIDSCREEN, which is funded by the European Commission within the generic activity "Public Health". The project started on February 1, 2001 (duration: 36 months).
The project which is coordinated by the study centre at the University of Hamburg cooperates with researchers from seven European countries (Austria, France, United Kingdom, Netherlands, Sweden,
Greece and Germany). Children and adolescents of the age-groups 4-7, 8-12 and 13-16 with chronic conditions such as asthma, cerebral palsy, diabetes mellitus, epilepsy, juvenile arthritis as well
as serious skin diseases, obesity and cystic fibrosis will participate in the study; parents and caregivers will also be involved.
The project proceeds according to three phases:
1. Development of an instrument (paper/pencil as well as a computer assisted version) to assess quality of life and patient needs in children/adolescents with chronic health conditions.
2. Psychometric testing of the developed instrument in the 7 pariticipating countries in a pilot study with 378 children/ adolescents and a subsequent field study with 1260 children/adolescents and their families (180 families in each country).
3. Implementation and Evaluation of the instrument in routine care
The project expects to achieve progress in quality of life assessment in children and adolescents with disabilities a) by focussing on an European co-operation in construction of an assessment instrument for quality of life, in which the persons concerned (children/adolescents and their families) play a major role, b) by addressing needs for care as explicitly voiced by the persons concerned, c) by including psychosocial as well as clinical and socio-economic determinants of quality of life and d) by developing a mode of administration which is practicable for the patient group concerned, so that in using the instrument, current care can be evaluated and future care can be improved by corresponding to the patients' needs.