Assessing quality of life of children with chronic health conditions and disabilities: a European approach

Quality of life has been used as a synonym for a subject-centred or individually appraised perspective on health. Despite the increase in quality of life research in adults, quality of life in children is relatively neglected. While generic measures begin to emerge now, methods to assess the quality of life of children with chronic conditions are still in development. The design of such an assessment tool for different age groups and different levels of disabilities is the objective of a European-Union-funded study: the DISABKIDS project. In addition, it addresses the psychosocial determinants of quality of life in children with disabilities. A major aim of the project is to develop and test instruments for children and adolescents with disabilities (as well as for their families) in seven countries, to assess the impact of the chronic health conditions on quality of life and to provide a tool for systematic monitoring of the quality of care given to children with disabilities. Assessment and monitoring will allow identification of unmet health care needs and, it is hoped, ultimately, the fostering of the development of effective intervention strategies.