Abstract

WHAT'S KNOWN ON THE SUBJECT? AND WHAT DOES THE STUDY ADD?: Many patients with bladder exstrophy or epispadias (BEE) have bladder augmentation or use a catheterisation programme. Of the remainder only some achieve so called '3-h urinary continence'. In addition, some of the patients develop urinary tract infections or bladder stones related to voiding and storage problems. The present study is one of the first to evaluate lower urinary tract symptoms (LUTS) in detail in young adults treated for BEE in childhood by using a validated questionnaire. In addition the patient's own opinion about continence was ascertained. The study shows that both voiding and storage symptoms are frequent in patients with BEE and that most symptoms only become apparent by using a detailed questionnaire. To evaluate lower urinary tract symptoms (LUTS) in patients with bladder exstrophy and epispadias (BEE) who have reached adulthood. A questionnaire evaluating LUTS was mailed to 52 BEE patients (aged 15-44 years), 32 (62%) returned the questionnaire (19 with bladder exstrophy and 13 with epispadias; 21 males and 11 females). Seven exstrophy patients (37%) had undergone bladder augmentation. Information on LUTS was assessed first with a preliminary question (do you have urinary incontinence?) followed by the Danish Prostatic Symptom Score (DAN-PSS) questionnaire. Of the patients without bladder augmentation or clean intermittent catheterisation, five of 11 patients with exstrophy and 6 of 13 with epispadias considered themselves dry and 13 of 24 (54%) patients had >3 h dry intervals between voiding. According to DAN-PSS questionnaire only two of 11 patients with exstrophy and two of 13 with epispadias were fully continent and could void normally. In addition to storage symptoms, eight of 13 patients with epispadias and 10 of 12 with exstrophy had disturbing voiding symptoms. Moderate or severe LUTS was reported altogether by 12 of 15 (80%) males and by six of nine females. Continence rates in patients with BEE are very dependent on the evaluation method. Most LUTS become apparent only by using a detailed questionnaire. Moderate or severe LUTS appear to be common amongst patients with BEE.

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