A sustained collaboration of pediatric urologists from the United States and India may offer a reproducible model for addressing the unmet global burden of surgical disease. Preliminary data from a prospective study of patients in India who had primary or redo surgeries for bladder exstrophy (BE) and penopubic epispadias (PE) suggests that this model can help achieve outcomes on par with those reported by academic research centers from higher-income countries.

The collaboration, called the International Bladder Exstrophy Consortium, began in 2009 when two pediatric urologists – Richard Grady, MD, from Seattle Children’s Hospital, and Aseem Shukla, MD, from Children’s Hospital of Philadelphia, established a relationship with the Civil Hospital B.J. Medical College in Ahmedabad, India. Since then, the consortium has expanded to include Cincinnati Children’s (Pramod P. Reddy, MD) and Sidra Medical and Research Center (Pippe Salle, MD) in Doha, Qatar. Surgeries take place at the Civil Hospital, a public institution in the state of Gujurat, which offers free medical care to a population of over 60 million.

Approximately 500 infants are born with BE each year in India (the incidence is one in 25,000-30,000 live births). “These children face a great deal of isolation and social stigma, and a successful surgical repair can be life-changing for the entire family,” says Pramod Reddy, MD, director of the Division of Pediatric Urology at Cincinnati Children’s, who joined the consortium in 2010. “However, there are only about five fellowship-trained pediatric urologists in India, a country of 1.3 billion people. It isn’t enough for American doctors to simply perform these surgical repairs and then return home – we must promote a long-term, sustainable model to address the surgical burden of caring for patients with BE and PE. We believe that our model of care is 100 percent replicable by other medical teams across a variety of medical and surgical specialties and can potentially benefit children with other complex medical conditions in low- to middle-income countries around the world.”

Key elements of the collaboration include commitments to:

• Return the same team of surgeons to the same institution each year.
• Partner with host hospitals that can offer a high level of surgical competence and capacity.
• Ensure patient retention and rigorous follow-up at the host hospital.
• Deliver outcomes, quality and safety equivalent to those of higher-income countries.
• Accelerate the surgical learning curve at the host hospital (although in reality all team members benefit from the learning through their participation in the collaboration).

During the study interval (January 2009-January 2015), a total of 75 children with BE (59) and isolated PE (16) underwent complete primary repair of exstrophy with anterior pubic osteotomies. A total of 76 percent returned for annual follow-up in 2016 and formed the study cohort. Data is being prepared for publication, but preliminary results show that the collaboration delivered outcomes that are on par with those reported by hospitals in higher-income countries, in areas such as morbidity and surgical outcomes.

As part of the collaboration, visiting surgeons taught host surgeons how to perform techniques such as primary reimplantation and bladder neck tailoring. The experience has been educational for surgeons traveling from the United States as well, Reddy says. “For the last five years, we have included pediatric urology fellows on the team as a way to provide them with a real-life understanding of how you can impact clinical outcomes in a different healthcare culture,” he says. “The scrub room at our host hospital is vastly different to what we are used to from an American perspective, yet the local surgical team achieves infection rates that are not that different from ours. If we were to focus our energy on creating a sterile surgical environment just to satisfy our anxiety and reproduce what we are used to in the U.S. healthcare system, that is not a good use of our time or expertise. So instead, every year we identify an achievable target for improvement that will benefit patients. In recent years this has included promoting family-centered care and educating parents about nutrition to promote faster healing.”

The collaboration continues in Ahmedabad, but without two of the visionary physicians who helped establish it. Atul Thakre, MD, a pediatric urologist in India, was on the planning team but died suddenly in 2010. Grady, the Seattle Children’s surgeon, died in 2017 after battling brain cancer. “These men continue to inspire us, and their legacy lives on through the knowledge that the surgeons gain by participating in this collaboration, and most importantly in the children whose lives have been transformed and will be transformed as a result of the consortium,” Reddy says.