Purpose We determined health related quality of life as reported by adolescents with bladder exstrophy or epispadias using a validated generic instrument. Materials and Methods Adolescents age 11 to 18 years with bladder exstrophy or epispadias (57) completed a validated, generic, health related quality of life instrument, the CHQ-CF87 (Child Health Questionnaire-Child Form 87). Urinary incontinence, catheterization status, and medical and surgical history data were also obtained. Mean summary scores and 95% CIs for each subdomain of the CHQ-CF87 were calculated, and descriptively compared to 2 population based samples. In our sample health related quality of life outcomes by continence status were compared using univariate and multivariate analysis. However, this analysis was limited by a small sample size. Results Mean age of the 49 patients with bladder exstrophy and the 8 with epispadias was 14.3 years, 67% were male and 81% were Caucasian. There were 31 participants who reported incontinence and the median number of lifetime surgeries was 9. The exstrophy population scored well in all subdomains of the instrument when descriptively compared to 2 large samples of adolescent populations. In our sample incontinent patients had lower scores by multivariate analysis in 7 of 10 domains and better scores in 3 of 10 domains, although these differences were not statistically significant. Conclusions Adolescents with bladder exstrophy and epispadias reported relatively good scores on the CHQ-CF87 when descriptively compared to other reference populations. This finding suggests that these children adapt well to the challenges of their condition. Analysis of the association of incontinence with health related quality of life was limited by the small sample size.

Purpose-Few groups have examined health related quality of life for adolescents with bladder exstrophy-epispadias. We studied parent reported health related quality of life for adolescents with bladder exstrophy-epispadias using the Child Health Questionnaire-Parent Form 50.Materials and Methods-We recruited 11 to 17-year-old participants with bladder exstrophyepispadias and their parents. Parents served as proxy respondents for the adolescents by selfadministering a validated generic health related quality of life instrument, the Child Health Questionnaire-Parent Form 50. We collected urinary incontinence, catheterization status, and medical and surgical history data. Mean questionnaire scores were compared to population based norms.Results-Median age of the 55 patients was 14 years, 69% were male and 84% were white. Diagnoses included bladder exstrophy in 48 cases and epispadias in 7. Of the participants 29 (53%) reported urinary incontinence. The median number of lifetime surgeries was 9. Although physical and psychosocial summary measure scores were comparable to norms, the mean general health perception score was significantly worse than that of a population based sample (65.8 points, p = 0.004). Mean family activity and parent emotional impact scores were also significantly worse than in a population based sample (83.6 points, p = 0.02 and 67.7, p <0.0001, respectively). Comparison of incontinent to continent children revealed a lower mean score on the parent emotional impact scale (62.6 points, 95% CI 55.5-69.8 vs 73.4, 95% CI 63.9-82.9), which approached significance (p = 0.06).Conclusions-Although overall adolescent quality of life was comparable to norms, parents reported significantly impaired adolescent general health and family activity as well as a negative parental emotional impact. Further research is needed to identify interventions that can decrease the adverse impact of bladder exstrophy-epispadias on family activity and parent emotional distress.* Correspondence: Department of Urology, Johns Hopkins Medical Institutions, Marburg 144, 600 North Wolfe St., Baltimore, Maryland 21287-2101 (telephone: 410-502-1810 FAX: 410-955-0833;, jdodson@jhmi.edu Bladder exstrophy-epispadias is a major congenital structural disorder in which the lower abdominal wall and bladder fail to form normally. Although this leads to urinary incontinence, the intellectual capacity of these children is not usually impaired. Surgical treatment for bladder exstrophy has evolved in the last 50 years, focusing mainly on providing urinary continence and improved cosmesis while maintaining kidney function, sexual function and fertility. 1 Surgical closure of bladder exstrophy is successful in many children but others require multiple surgeries, ranging from bladder re-closure to bladder neck procedures or continent catheterizable reservoirs. 1 While these interventions are implemented to improve the overall well-being of the child, there are few actual studies of HRQOL in this population and no agreed on measure of H...