Measuring self-reported, health-related, quality of life in adolescents with type 1 diabetes using both generic and disease-specific instruments

Aims: To describe perceived functional health and well-being and diabetes-related impact, worry and satisfaction with life in relation to demographic and clinical variables in a population of adolescents with type 1 diabetes. To compare perceived functional health and well-being between adolescents with diabetes and a group of healthy controls and to analyse the relationship between generic functional health and well-being and diabetes-related impact, worry and satisfaction with life. Methods: A total of 130 adolescents were invited to complete the Child Health Questionnaire (CHQ-CF87) and the Diabetes Quality of Life (DQOL) questionnaire modified for youths. A total of 115 (88.5%) subjects participated in the study; mean age 14.5 y (SD 1.86), mean duration of diabetes 6.99 y (SD 3.77, range 1-16 y), mean HbA(1c) 9.3% (SD 1.62, range 6.2-14.0%). Forty-eight percent of the subjects were girls. Results: When compared with healthy adolescents, subjects with diabetes reported a significantly lower degree of general health. The CHQ-CF87 scales showed that higher age in adolescents with diabetes was associated with lower scores for mental health (p < 0.001), self-esteem (p < 0.001), behaviour (p = 0.004) and general health (p < 0.001). Findings from the DQOL questionnaire showed that older adolescents were more worried (p < 0.001), perceived a greater impact of diabetes on daily life (p = 0.008) and lower diabetes-related life satisfaction (p < 0.001). The scores for girls were lower than those for boys in assessment of mental health (p < 0.001), self-esteem (p = 0.004) and family cohesion (p = 0.002). Girls also reported a greater impact of diabetes (p = 0.028), more worries (p = 0.001) and less satisfaction with life (p = 0.006) than boys. Neither HbA1c nor other clinical variables could sufficiently explain the variations in DQOL or CHQ-CF87. Conclusions: Health-related quality of life varied significantly by age and gender, but less so by HbA1c and other clinical variables. Adolescents with diabetes reported a significantly lower degree of general health than that reported by healthy controls. The CHQ-CF87 is a valuable supplement to DQOL, allowing for comparisons with the general population.