Multi-Center Study Explores Long-Term Outcomes for Classic Bladder Exstrophy
Published December 2019 | The Journal of Urology
Parents of children born with bladder exstrophy, an abnormality in which the bladder and penis are open and exposed on the outside of the abdomen at birth, face many questions about long-term impact on kidney function, urinary continence, sexual function, fertility, quality of life, and transitional care to adulthood.
A multi-center study of 216 patients born with exstrophy between 1980-2016 provides insights into the long-term management of the bladder after its initial closure.
Many patients require timed voiding, pelvic floor muscle retraining, medications, and/or clean intermittent catheterization to empty the bladder at regular intervals throughout the day to achieve urinary continence. Some patients ultimately require additional surgery, such as bladder augmentation or diversion. Augmentation uses the patient’s own gastrointestinal tissues to increase the size of the bladder; diversion re-routes urine into a reservoir or an ostomy bag.
“This was the first study to assess the long-term outcomes for a large cohort of patients with classic bladder exstrophy, and it demonstrated the importance and feasibility of multi-center collaboration on rare diseases,” says Andrew Strine, MD, co-director of the Comprehensive Fertility Care and Preservation Program at Cincinnati Children’s. “These findings are particularly useful in counseling patients and families.”
The probability of bladder augmentation or diversion after closure was 14.9% by age 5 years, 50.7% by 10 years and 70.1% by 18 years. Among all patients, 67.4% performed intermittent catheterization at last follow-up.
The study was chosen as the best clinical abstract at the 2017 Pediatric Urology Fall Conference in Montreal. Data also were presented at the 2018 International Exstrophy Conference. Now the team is working on a follow-up study to describe the prevalence of chronic kidney disease and renal failure in patients with classic bladder exstrophy.
