Children with posterior urethral valve (PUV) disorder face myriad complications affecting renal function, urination, fertility, mental health and quality of life. Multidisciplinary care is essential to their well-being, but too often the care they receive is compartmentalized, and treatment protocols vary widely. This results in costly and ineffective therapy with poor clinical outcomes: historically, over 50% of affected patients progress to end-stage renal disease and renal transplantation.  

The multidisciplinary PUV Center at Cincinnati Children’s is changing the paradigm. In 2022, the team cared for more than 150 children, a small increase compared to the previous year. Patients travel from as far away as the Middle East to see the specialty team at Cincinnati Children’s. The PUV Center is the first in the world to offer comprehensive, well-coordinated care for children with this rare disorder.

Expanding the Team

The center formalizes the hospital’s long-standing commitment to providing comprehensive, multidisciplinary care for patients with PUV disorder. The core team, led by Pramod Reddy, MD, director of the Division of Urology, includes specialists from urology, nephrology, pulmonology, developmental pediatrics, nutrition and behavioral medicine/clinical psychology. Together, these providers offer a monthly clinic for patients with PUV disorder, with the goal of preserving patients’ renal-bladder function and improving overall physical and mental wellness. 

The team’s high priorities include: 

• Coordinating medical management of patients with PUV disorder and mitigating complications and the risk factors for progression of kidney disease while reducing the cost of care for these patients 

• Optimizing nutrition, growth and development for patients with chronic kidney disease 

• Helping patients and families accept the diagnosis, adhere to the treatment plan and experience an improved quality of life

• Providing convenient access to standardized care, while still meeting each child’s unique needs 

• Conducting research aimed at improving diagnostic tools and identifying biomarkers of renal and bladder injury to be used in the clinical assessment of patients with PUV disorder

“As a urologist, it is tempting to focus mainly on bladder dysfunction and kidney injury, but we need to embrace cura personalis, the Jesuit principle of caring for the whole person,” Reddy says. “Our goal is to take a holistic, family-centered approach to preserving renal and bladder function, while not losing sight of issues such as nutrition, growth and development. We want to empower families and help patients be as independent as possible so they can live their lives to the fullest and not be held back by the sequelae of PUV.” 

Sometimes overlooked is the fact that, like many children with a chronic illness, those with PUV are at elevated risk for behavioral health concerns. At Cincinnati Children’s, clinical psychologists begin addressing this issue in the child’s first days of life.  

“When a newborn is admitted to the neonatal intensive care unit with PUV, I meet with the family to introduce the idea that behavioral medicine will be part of their lives moving forward,” says pediatric clinical psychologist Adrienne Borschuk, PhD. “Although much of the care our psychologists provide focuses on the child, parents will need a great deal of support in the years ahead, too. We can help them anticipate and cope with issues that may arise with their child, such as developmental delays, behavior concerns and the need to build independence in medical tasks.” 

Establishing a New Care Algorithm

Cincinnati Children’s currently has more than 200 active patients in its PUV registry, and the team has implemented several clinical initiatives to improve their health and outcomes. For example, Reddy and his colleagues created a decision-making care algorithm to standardize care pathways for patients with PUV disorder while minimizing costs. The team also leverages the electronic medical record to track PUV patients’ kidney function, missed clinic appointments, emergency room visits and more.  

If you are interested in receiving the decision-making care algorithm developed by the PUV team at Cincinnati Children’s, please email Pramod Reddy.