title: Health related quality of life in adolescents with abnormal bladder function: an assessment using the Child Health and Illness Profile-Adolescent Edition.
abstract: OBJECTIVE
  We studied the impact of abnormal bladder function due to congenital urological disorders on health related quality of life in children. A reliable patient based method is needed to assess the impact of these conditions in children and the interventions used to treat them.
  
  
  METHODS
  Participants 11 to 17 years old with bladder exstrophy-epispadias complex, spina bifida or other causes of abnormal bladder function self-administered the Child Health and Illness Profile-Adolescent Edition, a generic health related quality of life instrument. They also responded to questions about incontinence, catheterization status and bother level. Mean scores on the profile were compared to population based norms.
  
  
  RESULTS
  Mean age of the 50 participants was 14.9 years, 62% were male and 82% were white. Diagnoses included bladder exstrophy-epispadias complex in 37 patients, spina bifida in 10 and other in 3. The mean +/- SD score on the disorders domain of 14.2 +/- 6.3 was significantly worse than the population norm of 20. Mean scores on the satisfaction, discomfort, resilience, risks and achievement domains were comparable to or better than the population based norm of 20. A total of 29 participants reported incontinence and 31 performed catheterization.
  
  
  CONCLUSIONS
  In this study of adolescents with congenital causes of abnormal bladder function Child Health and Illness Profile-Adolescent Edition generic health related quality of life scores were significantly worse in the disorders domain but largely comparable to or better than those of the general population in other domains. This suggests that the profile may discern between adolescents with structural urological disease and norms but it may not be sensitive enough to fully detect the impact of the condition. Alternatively adolescents may adapt well to the challenges of urological disease.
authors: Department of Urology, The Johns Hopkins Medical Institutions, Baltimore, Maryland 21287-2101, USA. jdodson@jhmi.edu
authors: Jennifer L
authors: JL
authors: Dodson
authors: Susan L
authors: SL
authors: Furth
authors: Chun-Ju
authors: CJ
authors: Hsiao
authors: Marie
authors: M
authors: Diener-West
authors: Eric B
authors: EB
authors: Levey
authors: Albert W
authors: AW
authors: Wu
authors: John P
authors: JP
authors: Gearhart
mesh_terms: D000293:Adolescent; D001746:Bladder Exstrophy / Q000503:physiopathology; D002648:Child; D002669:Child Welfare; D003430:Cross-Sectional Studies; D004842:Epispadias / Q000503:physiopathology; D006304:Health Status; D006801:Humans; D008297:Male; D011788:Quality of Life; D016135:Spinal Dysraphism / Q000503:physiopathology; D001743:Urinary Bladder / Q000503:physiopathology*