UPMC Children’s IBD Center Transition to Adult Care Program Builds Patient and Family Success for Long-Term Health

Whitney Gray, CRNP, is an IBD Nurse Practitioner and has been a member of the UPMC Children’s Hospital of Pittsburgh Inflammatory Bowel Disease (IBD) Center in the Division of Gastroenterology, Hepatology and Nutrition for nearly a decade. Ms. Gray leads the IBD Center’s Transition Program, which is designed to help adolescents living with IBD – and their family members – prepare for the eventual shift to adult care. The Transition Program combines structured assessment tools with personalized follow-up and education. The program works to build patient self-management skills over time, and also help parents and caregivers navigate the emotional and logistical challenges of shifting care responsibility to the patient.

The program has evolved from informal readiness conversations into a formalized, documented process embedded within routine clinical care. Ms. Gray works closely with the pediatric and adult IBD teams to ensure that patients are prepared not only from a disease management perspective, but from a developmental one as well.

“Medical complexity is only part of the picture we deal with in the Transition Program,” says Ms. Gray. “Our patients are going through major life transitions – going to college and leaving home for the first time, jobs, moving, and personal independence. IBD becomes one of many competing priorities. We’re here to help our patients manage this reality effectively and safely.”

Early Education Embedded in the Clinic

Preparing for the transition to adult IBD care begins around age 14, with earlier awareness of this eventual reality often starting at 12 or 13. The first step is education, introducing the idea that patients will eventually take over responsibility for their care, and setting the expectation that this will be a gradual process. Readiness assessments are built into the patient’s annual visit schedule and are discussed in real time with patients and their families.

Ms. Gray uses two tools to guide the initial assessment process: the Transition Readiness Assessment Questionnaire (TRAQ) and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) IBD-specific checklist. The TRAQ, a widely used general assessment tool, measures things like appointment management, medication adherence, and communication. The NASPGHAN checklist offers IBD-specific detail and allows pediatric IBD providers to track whether patients understand their diagnosis, know their medications, and can explain their history and needs to others.

“The tools are a good entry point, but the conversation is what matters most,” Ms. Gray says. “We use them to start identifying where each patient is in the process, and to figure out what support they need from us in the next phase.”

Assessments are conducted in person or through the MyCHP digital health system and are reviewed by Ms. Gray in advance of the patient’s next visit. Patients are asked to complete the assessments without help from others.

“If a parent fills it out, I can tell,” Ms. Gray says. “We’re really trying to understand what the teen knows, where the gaps are, and how confident they feel in being able to manage their own care.”

Coaching and Conversation

Transition coaching is part of the patient’s annual visits, with different areas of emphasis over time depending on age, progress, and their individual needs. For younger patients, it can be reviewing the names of medications or asking them to take the lead in talking with the provider. With older teens and young adults, it often revolves around knowing their IBD care journey - prior treatments or why changes were made to their care, for example, because of side effects from specific medications. Another area of focus is on practicing communication for when they no longer have a parent with them in the exam room.

“We don’t want the first time a patient is navigating these things on their own to be when they are experiencing an acute flare up of symptoms,” Ms. Gray says. “We want them to feel ready and capable long before that ever occurs.”

Supporting Parents and Caregivers in Letting Go of Control

Making the transition from pediatric IBD care to adult IBD is a process the entire family undertakes. For many pediatric IBD patients, and perhaps the majority, parents have managed their child’s IBD since diagnosis and can find it difficult to step back from daily oversight. The work that Ms. Gray and the IBD center do in this area creates space to talk about the shift with caregivers, discussions that normalize the anxiety many parents feel, and offering structure to build trust over time.

“A lot of the fear parents have comes from not knowing if their child is ready to do this on their own,” Ms. Gray says. “We’re trying to give families the information and tools to help them feel confident in that process. Is it scary? Undoubtedly. No parent wants their child to suffer. But it’s a necessary step in the process. We meet each family, each individual where they are at and help them adjust to the changes.”

Part of the work is in helping parents recognize the signs that their child is managing their IBD well. These are activities including requesting refills independently, reaching out to the provider with questions or concerns, or keeping track of their infusion schedule and dietary intake. These skills are discussed openly during visits and help keep the clinical team, patient, and family aligned to the specific needs and goals of care.

Formal Handoffs and Documentation

The final phase of transitioning from pediatric to adult IBD care typically occurs between ages 18 and 22, but it can depend on individual patient readiness and other life circumstances. When a patient is preparing to transfer, Ms. Gray compiles a comprehensive clinical summary that includes their diagnosis, treatment history, test results, recent symptoms, and current medications – the entire history and details that will be critical for new providers to know. The summary is shared with the patient’s chosen adult IBD provider, and the patient also can access the information through their MyCHP account.

“What we create is less of a discharge summary and more of a working document,” Ms. Gray says. “It is meant to support the handoff between care teams, so nothing gets missed.”

The transition process also is documented in the patient’s medical record. This allows other members of the care team to track progress and reinforce key skills during their own interactions with the patient outside of the focused transition work conducted by Ms. Gray.

Improving Access

To reduce barriers for patients in rural or underserved areas, the Transition Program is available for clinical visits via telemedicine. Some patients do better face to face, while others can open up more in virtual visits. Portal-based questionnaires and remote coaching can help reach patients who live far from UPMC Children’s in Pittsburgh or who have limited time or resources to return for more frequent in-person appointments.

“We do not operate a one-size-fits-all program,” Ms. Gray says. “That applies to the specialized transition work we do with our patients, but it also is a core principle of the IBD Center itself. We are always thinking about how to make the program accessible, consistent, and responsive to what each of our patient need.”

Evolution and Future Programmatic Goals

As the Transition Program continues to evolve and expand its work, Ms. Gray hopes to create closer collaboration with UPMC adult IBD providers and create formal feedback loops about how patients are doing after they move out of pediatric and into adult care. The IBD Center also is working to develop quality improvement tools that will help track readiness data and patient outcomes longitudinally.

“The goal is lifelong engagement,” Ms. Gray says. “We want our patients to leave pediatric care informed and empowered to manage their condition successfully. That’s what transition is really about and why we spend so much time on it. ”

Learn more about the IBD Center at UPMC Children’s Hospital of Pittsburgh.