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Quality of Life Research, 7, pp.

399407

Assessing health-related quality of life in chronically ill children with the German KINDL: first psychometric and content analytical results
U. Ravens-Sieberer and M. Bullinger*
Department for Medical Psychology, University of Hamburg, Germany (U. Ravens-Sieberer, M. Bullinger)

Health-related quality of life is increasingly being considered as a relevant end-point and outcome criterion in evaluating the effects of medical treatment. While in adults quality of life instruments have been developed in terms of generic as well as disease-specific measures, quality of life assessment and children is a relatively new area. The current paper describes the application of a German generic quality of life instrument for children (the KINDL) in a group of 45 chronically ill children suffering from diabetes or asthma in comparison to 45 age- and gender-matched healthy children. The results of psychometric testing in these populations showed that the German KINDL is a reliable, valid and practical instrument to assess the health-related quality of life of children which should be supplemented by disease-specific modules and needs to be further tested in clinical populations.
Qual. Life Res. 7:399407 1998 Kluwer Academic Publishers

Key words: Children; quality of life; KINDL questionnaire; diabetes; asthma.

Introduction
The past years have seen an increase in theoretical and empirical papers on the topic of quality of life in medicine. Current work, however, mostly concerns the development of instruments and their application in studies with adults rather than children.1,2 Quality of life in children is a relevant end-point for evaluating the use of medical intervention in terms of prevention, in terms of treatment and in terms of rehabilitation for this special patient group.3 These interventions not only affect somatic parameters but also emotional and

*To whom correspondence should be addressed at Abt. fr Medizinische Psychologie, Universitt Hamburg, Kollaustrae 67/69-B, D 22529 Hamburg, Germany. Tel: +49-4717-6430; Fax: +49-4717-4940.

social aspects of living for the patients concerned. Because of the far-reaching ramifications of interventions in their effects on patients it has been recognized that well-being and function are also important treatment outcomes in children. Since the introduction of the quality of life concept to medical research, over 20,000 publications have appeared concerning the topic.3 Interestingly, however, only 13% of the publications identified are related to children (n = 3,050). Using a weighting for the search terms quality of life and child resulted (e.g. for 1994 and 1995) in only 320 publications that specifically focus on quality of life in children. In the 320 articles examined, the majority referred to theoretical or conceptional work (52%) and empirical quality of life research in specific chronic conditions (33%), while the testing of assessment instruments (9%) or empirical quality of life research in general (6%) was less prominent. The paediatric populations represented in these works mainly concern oncology followed by transplantation medicine. The age range of the sample studies pertains mainly to children and adolescents of 1318 years while younger children in the age range of 612 years have less frequently been included in quality of life studies. In spite of the different definitions of health-related quality of life in current literature,4,5 an international consensus about the components of quality of life within an operational definition of the term has evolved. According to a recent definition, healthrelated quality of life can be viewed as a psychological construct which describes the physical, mental, social, psychological and functional aspects of well-being and function from the patient perspective.68 This operational definition stresses the multidimensionality of the quality of life concept as well as the relevance of patients self-report. Although the four components of quality of life are not exhaustive and do not constitute a taxonomy, they heuristically denote the areas of importance to be

1998 Kluwer Academic Publishers

Quality of Life Research . Vol 7 . 1998

399

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