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.

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In a multinational working group, an instrument (Haemo-QoL) to assess quality of life in children/adolescents with haemophilia and their parents has been developed. In co-operation with haemophilia treatment centres in six European countries, approximately 10 children/adolescents with haemophilia per country and their parents were asked to participate in the pilot-testing. Both self-reported and parent-reported questionnaires were provided for two age-groups of children (4-16 years). Medical data was collected from physicians from patient files. Answers to open questions from participants (58 children and 57 parents) confirmed the content of 116 of the preliminary items. Cognitive debriefing revealed that the majority of the Haemo-QoL was rated favourably, but 29 questions were recommended to be omitted and several items to be reformulated. Preliminary psychometric testing of the revised 77 item questionnaire in the same sample showed acceptable reliability and validity, which will be examined in a subsequent study with a larger patient sample.

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Health-related quality of life (HRQOL) assessment in children and adolescents with chronic health conditions is increasingly considered as a relevant topic. The aim of the EU-funded DISABKIDS project is to develop, test, and implement European instruments for the assessment of HRQOL of children and adolescents with disabilities and their families. The current paper describes the development and pilot testing of a chronic generic HRQOL measure. Using literature searches, expert consulting and focus groups with children/adolescents and their families, items of the instruments were developed and translated into the respective languages. A pilot test with 360 children and adolescents was conducted. Children and adolescents (8-12, 13-16 years) with different chronic health conditions (asthma, epilepsy, diabetes, arthritis, atopic dermatitis, cerebral palsy, and cystic fibrosis) as well as their families were included. Data were analysed according to predefined psychometric and content criteria. Psychometric analyses resulted in a 56-item chronic generic HRQOL questionnaire with six domains ('Medication', 'Physical', 'Emotion', 'Independence', 'Social Inclusion', 'Social Exclusion') with acceptable internal consistency.