Health-Related Quality of Life Among German Youths With Early-Onset and Long-Duration Type 1 Diabetes

OBJECTIVE To evaluate self- and parent reports of general health status and health-related quality of life (QoL) in children and adolescents with early-onset and long-lasting type 1 diabetes compared with the general population in Germany. RESEARCH DESIGN AND METHODS A total of 629 subjects aged 11 to 17 years, with a type 1 diabetes onset occurring from age 0 to 4 years during the years 1993-1999, and their parents, completed questionnaires, including the generic KINDL-R Questionnaire for Measuring Health-Related Quality of Life in Children and Adolescents, revised version, to assess QoL. The comparison group (n = 6,813) was a representative sample from the German Health Interview and Examination Survey for Children and Adolescents (KiGGS) study. Regression analyses were conducted using sociodemographic and health-related covariates. RESULTS Intensified insulin therapy was used to treat 93% of children and adolescents with type 1 diabetes. They reported "excellent" general health as often as peers (adjusted OR 0.83 [95% CI 0.66-1.04] for an "excellent" rating), but the parent-rated general health was worse than that in the general population (OR 0.60 [0.48-0.74]). The patients reported increased self-esteem (adjusted difference β = 4.39 [SE 0.82]; P < 0.001) and well-being at school (β = 3.41 [0.77]; P < 0.001) but lower well-being within their families (β = -2.42 [0.80]; P = 0.002). The self- and parent-reported total QoL did not differ between the patient group and the general population. The adjusted difference (SE) between the two samples in total QoL was β = 0.89 (0.52; P = 0.087) in the self-reports and β = -0.98 (0.53; P = 0.066) in the parent-reports. CONCLUSIONS Compared with the general population, the QoL and general health status were not impaired among those aged 11-17 years with early-onset type 1 diabetes, despite the challenges of modern therapy.