Quality of life—evaluation criteria for children with chronic conditions in medical care

Health-related quality of life denotes the patients’ perception of well-being and function in physical, emotional, mental, social, and everyday life areas. In medicine, it is frequently used as an outcome criterion to evaluate the quality and effect of different therapies. It is also frequently used in epidemiological studies, as well as health economic research. Approaches to assess the quality of life include patients’ self-report versus report by other persons, multidimensional versus unidimensional assessment of well-being and function, as well as the use of generic versus disease-specific methods. In the past 20 years, a multitude of instruments to assess health-related quality of life has been developed, mostly for adults, complying with psychometric standards concerning the reliability, validity, and sensitivity of the scales. The current paper describes challenges to the assessment of the quality of life in children and adolescents, introduces widely used generic measures, and focuses on the application of these measures in the research context by using examples from a German prospective study in pediatric rehabilitation and an international project to develop a set of quality of life instruments for children with chronic conditions. The quality of life area has developed to be a major innovation also in public health. In terms of including the perspective of children and adolescents, efforts directed at assessments have increased recently, but much needs to be done to include these measures in epidemiological and clinical studies.