Systematic review of bladder exstrophy-epispadias complex definition of continence: A call for standardization

Achieving urinary continence is an important objective of surgical reconstruction for bladder exstrophy-epispadias complex (BEEC). Despite its importance to postoperative quality of life, there remains no universally accepted definition of continence in this patient population, with existing evidence suggesting highly inconsistent definitions across studies.

We aimed to determine whether a standardized definition of continence exists following intervention for BEEC and to characterize inconsistencies in reporting through a comprehensive systematic review.

Following PRISMA guidelines, a systematic search of PubMed, Embase, and Scopus databases was conducted to identify studies that defined/described post-intervention continence in pediatric and young adult populations (≤30 years old) with BEEC.

Of 1565 studies identified, 89 were included (n = 4057 subjects; 68% males). Classic bladder exstrophy was the primary condition in 49 studies (n = 2366), epispadias in 7 studies (n = 179), and cloacal exstrophy in 5 studies (n = 184). Twenty-eight studies assessed >1 condition, forming the "BEEC" subgroup (n = 1328). The most commonly utilized definition was "≥3-h dry interval in between voiding/catheterization" (50 studies; 56%). However, reporting was inconsistent regarding pad use, nighttime leakage, catheterization, and continence-promoting drug usage. Continence data were obtained from the patient/parent in 21 studies, while 66 did not specify whether continence was clinician- or patient-assessed. Use of the 3-h definition did not differ significantly by primary diagnosis (p = 0.69), study setting (single-vs. multicenter; p = 0.46), publication date (≥2012; p = 0.28), or country (p = 0.10).

Definitions of continence in BEEC remain highly variable. The most frequently used definition of continence included 3-h dry intervals in between voiding/catheterization. However, there were omissions in key factors such as pad use, nighttime leakage, and catheterization. Establishing a standardized definition of continence is essential for measuring success in this critical outcome and ultimately improving patient care.