Transitional Urology Program fulfills unmet need; informs future pediatric urologic care

An international leader in complex urologic surgeries, Riley Children’s Health combines clinical excellence with a commitment to address every aspect of a patient’s health, development and quality of life. Pediatric and adult urologist Joshua Roth, MD, PhD, extends this dedication through a unique Transitional Urology Program at Riley Children’s that provides care to patients 18 and older who are navigating their congenital health conditions as adults.

“Riley Children’s is a pioneer in pediatric urologic reconstruction, and as I was doing my training here, I saw the huge need for this type of care for patients who were becoming adults,” said Dr. Roth. “It’s a growing population that needs specialized attention and support to help manage their long-term healthcare.”

Started by Pediatric Urology Division Chief Rosalia Misseri, MD, the Transitional Urology Program at Riley Children’s is one of the few programs of its kind in the U.S. and also unique because it’s based in a children’s hospital. Dr. Roth, the first person in the nation fellowship trained in both pediatric urology and adult genitourinary reconstruction, brings a breadth of expertise to patients seeking continuity of care.

“When patients and families discover there is a person within Riley Children’s who is going to take care of them into adulthood, there’s just this huge sense of relief,” Dr. Roth said. “For patients with complicated surgical histories who require lifelong follow-up, they find comfort in knowing they remain in good hands with the level of care we provide here.”

The program, Dr. Roth said, is highly individualized based on the needs of each patient. For some, the care revolves around teaching patients how to advocate for themselves. This often includes counseling parents and families on how they can support their young adult in becoming as independent as possible in their healthcare journey. Dr. Roth and a team of experienced urology nurses also serve as healthcare navigators, connecting patients to other medical specialists and resources.

“We’re treating one of the first generations of patients with conditions like spina bifida, posterior urethral valves and bladder exstrophy who are surviving into adulthood,” said Dr. Roth, whose PhD dissertation focused on the challenges of caring for adults with congenital urologic conditions. “It’s not only rewarding to care for these patients as they grow older, but also from a research perspective, to learn from their experiences how we can improve pediatric urologic care for the future.”

In May 2024 Dr. Roth served as a chair of a research symposium, “Transitional Urology: The New Frontier,” at the annual American Urologic Association Conference. He keynoted a presentation on decisional regret regarding childhood surgeries and participated in discussions about medical disclosure of childhood surgeries to patients. The symposium included strategies for conducting patient-centered urologic research. Riley Urology is known for its groundbreaking development of QUALAS, an internationally validated, quality of life questionnaire for patients with spina bifida. (View notable QUALAS publications in Quality of Life Research, Urology and the Central European Journal of Urology.)

“Specifically identifying what’s important to these patients and uncovering how their surgical history has impacted their lives provides valuable insights for medical decision-making and informs future care,” Dr. Roth said. “With this research and by caring for adults in transitional urology programs, we can improve the care we deliver to the next generation of children born with these conditions.”

Urology at Riley Children’s Health

The fellowship-trained urology surgeons at Riley Children’s are internationally recognized for their expertise in treating complex urologic conditions. Riley Urology uses data-based performance metrics to continuously improve quality of care and to assist in helping elevate quality of life for patients with challenging conditions.