When It’s Time to Transition Out of the Pediatric Setting

If given the choice, many patients with complex urological conditions would continue seeing their pediatric urologist well into adulthood. A new initiative at Cincinnati Children’s is helping ease the transition to an adult care provider, with a standardized process that begins when the patient is a teenager.

The initiative is for patients with complex urology issues, such as myelomeningocele, posterior urethral valves, cloaca and anorectal malformation. “By the time these patients are in their early 20s, they should be seeing adult care providers in a tertiary medical center, because that is the ideal environment for them to receive optimal urological care,” says Andrew Strine, MD, a pediatric urologist who serves as physician lead for the initiative. “Another advantage is that when these patients experience non-urologic issues, such as heart disease, fertility concerns and non-healing wounds, the adult care provider is in the best position to make a referral to another specialist.”

A gradual process

As part of this initiative, physicians talk to patients about transitioning to the adult care setting during every check-up between the ages of 16 and 21. Guiding these conversations is a brochure developed by Katie Mueller, RN, MSN, a pediatric urology nurse practitioner at Cincinnati Children’s. The brochure includes tips and a checklist, and is a starting point for discussion. Over time it helps patients become better advocates for their own health care. Some of the items on the checklist include:

✔ I am able to describe my urological condition and name my medicines and why I take them.
✔ I can manage my care at school with some help.
✔ I talk with my provider during visits and can answer at least one question during the visit.

When the time comes for the patient to transition (usually at about age 21), the physician makes a referral to one of several skilled urologists at a practice at University of Cincinnati Medical Center, located across the street from Cincinnati Children’s. Prior to the first appointment, a medical assistant within that practice collects all pertinent records, including operative reports, radiological images, and a summary of supplies and medications used. If the patient decides to see a different adult care provider, the team at Cincinnati Children’s will help make that transition as smooth as possible as well.

A smooth hand-off

During the transition, most patients return to the pediatric urology clinic at least once for a checkup. All are asked to complete a questionnaire to provide feedback on the process.

Pediatric urologists transition patients in their 20s, 30s, 40s and beyond to adult care providers in an abbreviated process that utilizes a separate checklist. The transition to adult care is delayed for any patient who is medically unstable or needs surgery in the near future.

Patient and family feedback has been positive so far, but the process can be challenging for some, says Mueller. “Some patients who have been coming to Cincinnati Children’s their whole lives are scared to make the switch,” she explains. “Our message is: ‘we have identified skilled providers who will take good care of you, we will be here for you until you transition, and you can do this!’ It is a little sad to say goodbye. But our team is proud that these patients can go into this next step of life to direct their own health care.”

Adults with complex urological conditions may continue to see pediatric specialists at Cincinnati Children’s for related concerns, such as bowel management and kidney failure. However, many clinics within the medical center are working toward a transition model to help establish patients with an adult care specialist.