Continence outcomes following reconstructive lower urinary tract surgery in incontinent adults and adolescents previously operated in childhood for exstrophy/epispadias complex.

Purpose: To describe the presentation and outcome of surgical management strategies applied to the adolescent and adult patient population (age >14 years) with bladder exstrophy/epispadias complex (BEEC) who presented with persistent incontinence even after previous numerous surgeries at our institution.

Methods: A retrospective review of the electronic medical records of patients with BEEC managed from January 1998 to December 2022 was undertaken. Patients aged >14 years at presentation, with detailed medical records were selected. Of these, we identified patients who underwent surgical intervention for incontinence primarily. Data on presenting symptoms, clinical findings, previous and present surgical intervention, post-operative complications, secondary procedures and follow-up periods were recorded. Data on continence was collected in the form of clean intermittent catherization (CIC) or voiding frequency, dry intervals and diaper usage. Subjective assessment of continence was assessed by a cross sectional survey using the International Consultation on Incontinence modular Questionnaire Urinary Incontinence (ICIQ-UI) short form. A patient was considered socially continent if he or she could perform normal activities without fear of urinary leak.

Results: A total of 27 (16 male and 11 female) patients of BEEC, aged 14 years and above who underwent surgical intervention for persistent incontinence in adolescence or adulthood following previous repairs over this 24-year period were identified and their records reviewed. Median age of presentation was 21 years (IQR, 14-25.8) and they had undergone a median of 4 surgeries prior to presentation (range, 2-10). Three patients had already been augmented with bowel along with a Mitrofanoff channel. The median follow-up was 42 months (range, 24-117). Regarding continence outcomes, at last follow-up, only one patient was volitionally voiding to completion, with the rest doing CIC through Mitrofanoff channel or by perurethral route with nearly 60 % (14/24) having a dry interval of 90 min. After excluding 3 patients who underwent incontinent urinary diversion, 17/24 (71.7 %) patients had no need for diapers and only 5/24 (21 %) had severe persistence urinary incontinence based on ICIQ UI scores. More importantly, 16/24 (67 %) of the patients in our cohort group were socially continent.

Conclusions: BEEC is difficult to manage, especially in resource-poor settings and some children reach adolescence and remain incontinent. However, with careful preoperative assessment and exact surgical precision, a decent level of social continence can be expected, even in these patients presenting late in adulthood.