Abstract
To assess urological function, sexual function, and quality of life in patients with exstrophy or epispadias. Little is known regarding these outcomes in adult patients; our aim is to determine where improvements are needed for long-term management. The study population comprised adult (>18 years) patients. Demographic data were gathered and patients were asked to fill out 4 validated questionnaires: (1) International Consultation on Incontinence Questionnaire urinary incontinence form (ICIQ-UI) regarding continence; (2) International Prostate Symptom Score (IPSS) for men and International Consultation on Incontinence Questionnaire-Female Lower Urinary Tract Symptoms (ICIQ-FLUTS) for women regarding lower urinary tract symptoms; (3) 12-Item Short Form Health Survey regarding quality of life; (4) International Index of Erectile Function for men and Female Sexual Function Index for women regarding sexual function. Seventeen patients were included (9 men and 8 women) with a median age of 36 years (range 19-73). Median score on ICIQ-UI was 5/21. Median IPSS score was 7/35 and median quality of life score was 1 (=pleased). Median scores per domain within ICIQ-FLUTS were 7 for storage, 0 for voiding, and 6 for urinary incontinence with bother scores of 4, 0, and 2.8, respectively. Scores for 12-Item Short Form Health Survey in the study population were comparable with those of the Dutch population, except for Physical Component Summary in women. For sexual function, no difference was found between those in the general population and our participants except for the domain "pain" in Female Sexual Function Index. Adult patients with exstrophy or epispadias have a high rate of incontinence and lower urinary tract symptoms with relatively low to some degree of bother. When compared with the general population, quality of life, and sexual function of our patients were more or less similar.
Highlights
The exstrophy-epispadias complex (BEEC) consists of 3 disorders: bladder exstrophy, epispadias, and cloacal exstrophy
Isolated epispadias is less common than classical bladder exstrophy and is diagnosed in 1 in 200,000-400,000 live births.[1,2]
Because of relatively small sample size and a varying surgical history, our goal is to present the overall result of treatment of BEEC and follow-up, not the result of any particular surgical technique
Summary
The exstrophy-epispadias complex (BEEC) consists of 3 disorders: bladder exstrophy, epispadias, and cloacal exstrophy. Epispadias is the least severe defect of the group, characterized by failure of the urethra to close normally, and as a result, the inner lining of the urethra lays flat and exposed on the dorsal surface of the penis in boys and in girls there is a nonclosed urethral plate. Patients with bladder exstrophy will have epispadias. Isolated epispadias is less common than classical bladder exstrophy and is diagnosed in 1 in 200,000-400,000 live births.[1,2] Bladder exstrophy is classically characteriz
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