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


METHODS
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.


CONCLUSIONS
Reliability, construct validity as well as convergent and discriminant validity of the DCGM-37 were shown.
Simeoni
Marie-Claude
MC
Public Health Department, University Hospital of Marseille, Marseille, France. marie-claude.simeoni@medecine.univ-mrs.fr
Schmidt
Silke
S
Muehlan
Holger
H
Debensason
David
D
Bullinger
Monika
M
D000293:Adolescent; D002648:Child; D002908:Chronic Disease / Q000208:ethnology / Q000523:psychology*; D003469:Culture; D003710:Demography; D005060:Europe; D005260:Female; D006801:Humans; D008297:Male; D011594:Psychometrics / Q000295:instrumentation*; D011788:Quality of Life / Q000523:psychology*; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires