Field testing of a European quality of life instrument for children and adolescents with chronic conditions: the 37-item DISABKIDS Chronic Generic Module

Objectives The aim of this study was to shorten the Health-Related Quality of Life (HRQL) DISABKIDS Chronic Generic Measure (DCGM) for children and adolescents and to test its reliability, construct, and external validity. Study design 1153 children and adolescents (8–16 years) with chronic health conditions (asthma, arthritis, epilepsy, cerebral palsy, diabetes, atopic dermatitis, cystic fibrosis) and their family were recruited from different paediatric clinical settings in seven European countries. A two-time assessment comprised reports on sociodemographics, health status and HRQL of children/adolescents. Results The 37-item DCGM describes six dimensions (Independence, Physical Limitation, Emotion, Social Inclusion, Social Exclusion and Treatment) confirmed by Confirmatory Factor Analysis, multi-item scaling and item-goodness of fit to Rasch model. Internal consistency (Cronbach’s alpha: 0.70–0.87) and test-retest reliability (ICC: 0.71–0.83) were satisfactory. Correlations between DCGM-37 and other HRQL instruments were the highest between dimensions evaluating similar concepts. Regarding discriminant validity of the DCGM-37, girls and older adolescents reported lower emotional we ll-being. Children belonging to families with low level of affluence and those with severe health conditions were found to have worse HRQL in all domains. Conculsion Reliability, construct validity as well as convergent and discriminant validity of the DCGM-37 were shown. The DISABKIDS Group comprises a coordinating group (Prof. Monika Bullinger, Dr. Silke Schmidt, Dr. Corinna Petersen, Institute of Medical Psychology, University Clinic Hamburg-Eppendorf) and study centres in seven countries: Prof. Michael Quittan, Dr. Othmar Schuhfried, Department of Physical Medicine and Rehabilitation, University of Vienna, Austria; Dr. Marie Claude Simeoni, Dr. David Debensason, Delphine Orbicini, 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, Department of Psychiatry, Ass. Prof. John Tsanakas, Dr. Elpis Hatziagorou and Dr. Paraskevi Karagianni, Department of Paediatrics, Hippocratio Hospital, Greece; Dr. Hendrik Koopman and Dr. 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, Clinical and Health Psychology, University of Edinburgh, United Kingdom.