A Model for Sustained Collaboration to Address the Unmet Global Burden of Bladder Exstrophy-Epispadias Complex and Penopubic Epispadias

Abstract

A unique surgical mission model consisting of an international collaborative focused on treating the complex diagnoses of BE and PE offers outcomes comparable with those in high-income countries, demonstrating a significant patient retention rate and an opportunity to rigorously study outcomes over an accelerated interval owing to the high burden of disease in India. Postoperative care following a systematized algorithm and rigorous follow-up is mandatory to ensure safety and optimal outcomes.

Pediatric Urology and Global Health

“…Medical College in Ahmedabad, India in 2009. 18 IBEC currently includes a multidisciplinary team from 3 ARCs both in the Unites States and Qatar (Seattle Children’s Hospital, Seattle, Washington; Children’ Hospital of Philadelphia, Philadelphia, Pennsylvania; Cincinnati Children’s Hospital, Cincinnati, Ohio; and Sidra Medicine, Doha, Qatar) that travels to Ahmedabad for 8 days annually to provide continued hands-on surgical training of the local pediatric surgery team as well as long-term follow up of treated patients. A recent publication by Joshi and colleagues evaluated the IBEC program and determined that not only was long-term follow up and retention feasible within the infrastructure of the collaborative model, but that the outcomes of these complex reconstructive procedures for BE and epispadias were comparable to those at ARCs in HIC.…”

“…A recent publication by Joshi and colleagues evaluated the IBEC program and determined that not only was long-term follow up and retention feasible within the infrastructure of the collaborative model, but that the outcomes of these complex reconstructive procedures for BE and epispadias were comparable to those at ARCs in HIC. 18…”

“…The ultimate goal must be to build surgical capacity in LMICs with limited access to surgical sub-specialists, and IBEC is one approach to comprehensively address complex conditions in pediatric urology through collaboration between a committed traveling team and a strong local team. 18…”

“…Through regionalization of care, the local team is often exposed to a high volume of complex cases which allows for not only more rapid accumulation of experience but also the ability to report outcomes of larger patient series than even the sponsoring ARCs. 18…”

Caregiver distress: A mixed methods evaluation of the mental health burden of caring for children with bladder exstrophy

“…The intensive surgical and medical management required to achieve anatomic integrity and future continence of children with BEEC may also be a contributing factor to caregiver and patient distress. The International Bladder Exstrophy Consortium (9), conceived in 2009 to partly address a large burden of unmet surgical need in India, utilizes the complete primary repair of exstrophy (CPRE) in an effort to minimize the number of subsequent repairs. But, the post-operative period can still be complicated by numerous events that could necessitate additional operations including penopubic fistula, bladder outlet obstruction, hypospadiac meatus at closure, and bladder dehiscence.…”