Health Related Quality of Life in Adolescents with Bladder Exstrophy-Epispadias as Measured by the Child Health Questionnaire-Child Form 87

Abstract

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.

Health-related Quality of Life and Mental Health in Adolescents and Adults Operated for Bladder Exstrophy and Epispadias

“…HRQoL was not reduced in the study from Boston in 8-to 25-year-old BE patients when measured with Pediatric Quality of Life Inventory or in another study from the United States of America, in which 49 adolescent BEE patients were evaluated with Child Health Questionnaire-Child Form 87. 12,13 In our study, BE patients had a tendency to poorer scores in all dimensions of HRQoL and psychiatric symptoms than epispadias patients. However, significant difference was observed only in somatization scores.…”

“…Similarly, the incontinent BEE patients have been shown to have a tendency to poorer HRQoL in most dimensions of Child Health Questionnaire-Child Form 87. 13 In our material, the patients with the need of diapers had a tendency to poorer scores of HRQoL and more psychiatric symptoms than the patients with more occasional or mild incontinence or bladder augmentation. Of interest, none of the incontinent patients were interested in bladder augmentation in a phone or outpatient clinic discussion at the end of the study, in spite of our national social security system, when informed that CIC program is needed after the operation.…”

Éthique et anomalies de développement génitosexuel

“…Cette appréciation de la qualité de la vie ne va sans problèmes méthodologiques, mais elle doit faire partie des éva-luations dans les ADS, aussi bien chez l'enfant [27] que chez l'adulte [28,29].…”

Patient Reported Health Related Quality of Life Measures—What Do the Scores Mean and How Do They Relate to Patient Outcomes and Care?

“…For example, as discussed in this issue of The Journal, Schaeffer et al (page 1924) found that despite expectations to the contrary, adolescents with the bladder epispadias-exstrophy complex demonstrated surprisingly robust self-esteem. 7 Other evidence indicates that measuring HRQOL can bolster medical decision making. However, as Varni et al noted, the ability of HRQOL measures to meaningfully support medical decision making depends on the measures being easily administered and interpretable.…”