Urologist Timothy Boswell, M.D., speaks with a patient at Children’s of Alabama.
For children who grow up coping with congenital urologic conditions, there’s no standard process guiding their transition to an adult urology program—meaning these patients can feel adrift at a critical point in their care. But Children’s of Alabama pediatric urologist Timothy Boswell, M.D., is setting out to change that in hopes of smoothing their path forward.
Boswell recently received a University of Alabama at Birmingham (UAB) faculty development grant to examine how to improve care for patients with congenital urology problems, who face a lifelong need for follow-up. He plans to use the funds to tap into the wealth of knowledge these patients can share, reimbursing them for their time being interviewed or filling out surveys asking them about their experiences as they age through care.
“There’s no set way of doing this around the country—every hospital has its own way,” explained Boswell, who’s also an assistant professor of pediatric urology at UAB. “We want to figure out what’s going to work best for our system, but we also want to catalog this scientifically to help others down the road. It has become more evident that these young adult patients with congenital anomalies can fall through the cracks.”
Urologic problems in children that persist through adulthood aren’t common, but those that do can have pervasive and often treatable effects on quality of life, Boswell says. “That brings the challenge of having enough patients to learn from, but it also makes it more feasible to manage the whole population of them,” he said. “That’s our goal. Since we’re the main pediatric offering in the region, we have many of these patients, so we’re poised to learn from them.”
The most prevalent congenital urologic condition persisting through adulthood is spina bifida, Boswell notes, followed by conditions such as posterior urethral valves or major urologic reconstruction after cancer or for another reason. Standing on the shoulders of a well-structured pediatric spina bifida clinic, UAB and Children’s providers recently established an adult spina bifida clinic that is paving the way in serving these specific pediatric urologic patients as they transition to adult care.
Research on spina bifida patients in the general population indicates they often don’t establish regular adult care after leaving a pediatric setting. “They end up coming into the ER with urinary tract infections, kidney stones or bladder stones, and the assumption is that this is because they haven’t gotten good enough regular outpatient care,” Boswell said. “But those types of analyses haven’t been done as much in patients with other urologic diagnoses to know what problems or challenges those patients have.”
“The progress the UAB adult spina bifida clinic is making for spina bifida patients serves as a good representation of the improvement that can be made in this patient population with a focused effort to improve their transition,” he added. “I’ll be interviewing some patients with spina bifida to learn what they’re experiencing and compare and contrast that with other groups of congenital urology patients who don’t have a structured transition process.” As part of his research, Boswell hopes to also reach out to patients with congenital urologic problems who aren’t receiving regular care, giving Children’s the opportunity “to potentially plug them back in and prevent complications,” he said. “The project has fluidity to it in trying to determine what the major issues are, and my strategy is to adjust as we go with the goal of improving their care, and all those to follow them.”