Parent Perspectives of Health Related Quality of Life in Adolescents With Chronic Kidney Disease Due to Underlying Urological Disorders: An Assessment Using the Child Health Questionnaire-Parent Form 50

Purpose: Little is known about health related quality of life in adolescents with chronic kidney disease due to urological anomalies. We assessed generic health related quality of life in this population using a validated parent proxy instrument. Materials and Methods: In this multicenter prospective cohort study the Child Health Questionnaire-Parent Form 50, a generic health related quality of life parent proxy instrument, was administered to 92 parents of adolescents 10 to 18 years old with chronic kidney disease. Mean summary measure and scale scores in adolescents with urological anomalies were compared to scores in those with other causes of kidney disease and in a representative American population sample. Results: The cohort included 35 adolescents with an underlying diagnosis of congenital urological anomaly and 57 with another cause of kidney disease. There were no significant differences in mean scale or summary measure scores between the 2 diagnostic groups. When compared to a representative population sample, adolescents with congenital urological anomalies scored significantly worse on the questionnaire physical summary measure (44.5, 95% CI 39.9-49.1 vs 52.0, 95% CI 51.1-52.9, p = 0.002), and on the Child Health Questionnaire scales physical functioning, role physical, general health perceptions, family activities and parental emotional impact. Conclusions: As assessed by Child Health Questionnaire-Parent Form 50, parents reported that adolescents with chronic kidney disease due to urological disorders scored lower on the physical summary measure than a population based reference sample and they reported a negative effect on family activities and parental emotional well-being. These findings suggest that the Child Health Questionnaire-Parent Form 50 could provide a family based assessment of generic health related quality of life in adolescents with urological disorders.