Children with Bladder Exstrophy Need Long-Term Kidney Health Monitoring

Published April 2022 | Journal of Pediatric Urology

For children born with bladder exstrophy, a rare condition in which the bladder develops outside the body, continuous kidney monitoring is a necessity. Follow-up is especially important after surgical reconstruction of the bladder, according to research conducted by Pramod Reddy, MD, director, Division of Pediatric Urology, and colleagues.

Surgical reconstruction is an important treatment for severe cases of bladder exstrophy, but it comes with complications. Regardless of the technique used for the initial repair, children with this condition remain at high risk for chronic kidney disease and other complications later in life, including incontinence and sexual dysfunction.

This study analyzed upper urinary tract deterioration or chronic kidney disease after complete primary repair of exstrophy (CPRE) in 104 children over a 10-year period. The project was part of the US-India Bladder Exstrophy Collaboration, with relevant data collected from patients in India.

“The result of this research is a recommendation for a follow-up plan to ensure proper surveillance of patient kidney health,” Reddy says. “The study provides a framework on how to counsel the families of these patients on their long-term health outcomes.”

Follow-up studies evaluating ongoing kidney outcomes of these patients are already in the works. Of particular interest is how children with this condition achieve urinary continence as they get older—particularly through puberty.

Next steps for this research include analyzing patient and family reported outcomes on quality of life, including mental health, as these children grow, as well as continuous monitoring for chronic kidney disease.