, Volume 14, Issue 4, pp 1065-1077

Development and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: A European perspective

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Abstract

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.

The DISABKIDS Group - The DISABKIDS Group comprises a coordinating group (Prof. Monika Bullinger, Dr. Corinna Petersen, Dr. Silke Schmidt, Institute of Medical Psychology, University Clinic Hamburg-Eppendorf) and study centres in seven countries: Prof. Michael Quittan, Dr. Nilouparak Hachemian and Dr. Othmar Schuhfried, Department of Physical Medicine and Rehabilitation, University of Vienna, Austria; Dr. Marie Claude Simeoni and Dr. Audrey Clement, Department of Public Health, University Hospital of Marseille, France; Dr. Ute Thyen. and Dipl.-Psych. Esther Müller-Godeffroy, Department of Paediatrics, Medical University of Lübeck, Germany; Dr. Athanasios Vidalis, Ass. Prof. John Tsanakas, Dr. Elpis Hatziagorou and Dr. Paraskevi Karagianni, Department of Psychiatry, Hippocratio Hospital, Greece; Dr. Hendrik Koopmann and Drs. Rolanda Baars, Department of Paediatrics, Leiden University Medical Centre, Netherlands; Dr. John Eric Chaplin, Department of Paediatrics, University Hospital Lund, Sweden; Prof. Mick Power, Dr. Clare Atherton and Dr. Peter Hoare, Department of Psychiatry, University of Edinburgh, United Kingdom.