Long-term Outcomes of Bladder Exstrophy–Epispadias Complex: A Multicenter Study by Indian Association of Pediatric Surgeons

A BSTRACT Background: Bladder exstrophy–epispadias complex (BEEC) requires complex reconstruction, yet long-term comparative outcomes from low- and middle-income countries are limited. Materials and Methods: This Indian Association of Pediatric Surgeons (IAPS) multicenter, retrospective cohort study included 59 patients (2000–2020) stratified into modern staged repair of exstrophy (MSRE, n = 20), complete primary reconstruction of exstrophy (CPRE, n = 35), and radical soft-tissue mobilization (RSTM, n = 4). Outcomes included continence (Likert scale 1–5), bladder capacity, complications, reoperations, QoL, and predictors of continence. Results: The mean continence score was 3.47 ± 0.97 (95% confidence interval [CI]: 3.22–3.73). CPRE (4.15 ± 1.11) and RSTM (4.0 ± 1.29) significantly outperformed MSRE (3.02 ± 0.97) (Bonferroni: P <0.001). Acceptable continence (≥4) was achieved in 54.3% CPRE, 50% RSTM, and 30% MSRE. Regression analysis showed earlier surgery (β =0.31, P = 0.005), CPRE (β = −0.53, P = 0.013), and bladder neck reconstruction (β = −0.33, P = 0.021) as independent predictors, while osteotomy was not significant ( P = 0.35). Mean bladder capacity was 146.4 ± 96.8 cc (95% CI: 121.1–171.6), highest in CPRE (248.2 cc) versus RSTM (152.5 cc) and MSRE (132.1 cc). Complications varied: bladder dehiscence occurred in 40% MSRE versus 5.7% CPRE and 0% RSTM; urinary tract infection/VUR in 12% overall, highest in RSTM (50%); upper tract dilatation in 22.9% CPRE only. Reoperations were required in 45% MSRE versus 51.4% CPRE and 25% RSTM. QoL scores were higher in CPRE (3.7 ± 1.01) and RSTM (3.75 ± 1.24) than MSRE (2.97 ± 0.92). Sexual and reproductive outcomes were poorly documented (<15% assessed). Conclusion: CPRE demonstrated the most favorable long-term outcomes, with significantly better continence, higher bladder capacities, fewer reoperations, and superior quality of life compared with MSRE. RSTM yielded encouraging results but requires larger cohorts. This IAPS study identifies early surgery and bladder neck reconstruction as key predictors of success, while underscoring the urgent need for standardized, prospective surveillance of renal, sexual, and reproductive health in BEEC patients and need for longer follow-up.