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

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Abstract

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.

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Acknowledgments

The rehabilitation project was funded by the Bundesforschungsministerium (BMBF) and Verband der Deutschen Rentenversicherungsträger (VDR) within the research consortium “Rehabilitations-wissenschaftlichen Forschungsverbünde Deutschland,” in the research network Niedersachsen/Bremen (RFNB, 1.Phase: Project C2). The project leaders were Bullinger, M.1 and Ravens-Sieberer, U.1, as well as Redegeld, M.1. Collaborators were Bauer, C.-P.2, Mayer, H.3, Stachow, R.4, Kiosz, A.5, van Egmond-Fröhlich, A.6, Rempis, R.7, Kraft, D.8 at: Institut für Medizinische Psychologie, Hamburg1; Fachklinik Gaißach, Gaißach2; Klinik Hochried, Murnau3; Fachklinik Sylt, Westerland/Sylt4; Klinik Satteldüne, Amrum5; Kinder-Rehaklinik am Nicolausholz, Bad-Kösen6; Kurklinik Am Hochwald, Bruchweiler7; Seehospiz Norderney, Norderney8.

Funded by the European Commission, the DISABKIDS project is a cross-national effort to develop standardized questionnaires of health-related quality of life and the needs of children and adolescents with chronic conditions. Contract number: QLG-CT-2000-00716. The DISABKIDS group comprises a co-ordinating group: Monika Bullinger, Silke Schmidt, and Corinna Petersen, Department of Medical Psychology, University Hospital of Hamburg, Germany. Collaborating investigators in each of the field centers: Hendrik Koopman and Rolanda Baars, Department of Paediatrics, Leiden University Medical Center, The Netherlands; Peter Hoare, Royal Hospital for Sick Children Edinburgh, Mick Power and Clare Atherton, Section of Clinical and Health Psychology, University of Edinburgh, United Kingdom; Marie Claude Simeoni, Department of Public Health, University Hospital of Marseille, France; John Tsanakas, Paraskevi Karagianni, and Elpis Hatziagorou, University Paediatric Clinic, Athanasios Vidalis, Department of Psychiatry at Hippocratio Hospital, Greece; John Eric Chaplin, Department of Paediatrics, University Hospital Lund, Sweden; Michael Quittan, Othmar Schuhfried, and Nilouparak Hachemian, Department of Physical Medicine and Rehabilitation, University of Vienna, Austria; Ute Thyen and Esther Müller-Godeffroy, Department of Paediatrics, Medical University of Luebeck, Germany.

Conflict of interest statement

The authors declare that there is no conflict of interest with regard to this manuscript or the research included in it. The DISABKIDS project was funded by the 5th framework program of the European Commission (QLG-CT-2000-00716). The rehabilitation project was funded by Bundesforschungsministerium (see acknowledgements).

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Authors and Affiliations

  1. Institute for Medical Psychology, Center for Psychosocial Medicine, University Hospital Hamburg–Eppendorf, Martinistr. 52, Haus S 35, 20246, Berlin, Germany

    Monika Bullinger, Silke Schmidt & Corinna Petersen

  2. Head, Research Unit Child and Adolescent Health, Robert Koch-Institut, Berlin, Germany

    Ulrike Ravens-Sieberer

  3. Department of Psychosomatics in Children and Adolescents, Center of Gynaecology, Obstetrics and Paediatrics, University Hospital Hamburg–Eppendorf, Hamburg, Germany

    Ulrike Ravens-Sieberer

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  1. Monika Bullinger
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  2. Silke Schmidt
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  4. Ulrike Ravens-Sieberer
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Correspondence to Monika Bullinger.

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Bullinger, M., Schmidt, S., Petersen, C. et al. Quality of life—evaluation criteria for children with chronic conditions in medical care. J Public Health 14, 343–355 (2006). https://doi.org/10.1007/s10389-006-0066-0

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