UPMC Children’s IBD Center Teaches Skills and Accountability for Young Adults with IBD University Program

The Inflammatory Bowel Disease (IBD) Center at UPMC Children’s Hospital of Pittsburgh provides a range of education and transition efforts for patients and their families that are designed to facilitate the move from pediatric to adult IBD care. One of the newer initiatives created within the IBD Center is a novel program called IBD University. IBD University is an internal “graduation program” for young adult patients that introduces new expectations in self-care and reinforces long-term self-management strategies and goals.

IBD University was created and launched in response to a specific pattern observed in the clinic. Patients ages 18 to 22 were struggling to keep appointments, communicate with the team, and maintain continuity of care. Some were still being scheduled by parents. Others were simply not showing up for routine clinic visits or other appointments.

“What we were seeing in some of our patients was not a medical issue, but rather a developmental one,” says Whitney Gray, CRNP, pediatric IBD advanced practice provider and leader of the IBD Center’s Transition Program. “These were patients who had the capacity to manage their care, but they hadn’t been asked to yet. We realized we needed to be clearer about our expectations, so we developed a structured program to address this issue.”

Defining What it Means to Be an Adult Patient

IBD University is offered to patients beginning around age 18 as a voluntary part of the IBD Center’s formal transition program. The process starts with a one-on-one discussion that introduces the goals of the initiative, sets expectations for participation, and reviews the timeline for graduation. Patients are asked to take ownership of appointment scheduling, communications with their provider team, medication refill requests, and symptom reporting.

At the center of the program is a written expectations contract (pictured left), which patients review and sign at the beginning of their IBD University participation. The contract outlines mandatory responsibilities, including showing up for visits, sending messages directly to the care team through the MyCHP digital health portal, and getting regular monitoring lab sand the repercussions of not abiding by the agreement. It also serves as a prompt during follow-up conversations. “The formality and rules around IBD University are less about punishing patients who miss a step, and more about giving them the clarity, structure, and expectations they need to learn in order to successfully self-manage their chronic illness,” Ms. Gray says. “We try to show them what good engagement looks like and help them practice these skills until it becomes second nature.”

The IBD University process is a collaborative effort between the patient and their entire care team. For patients who may encounter barriers or who are struggling with certain aspects of their care, the IBD University contract creates a structure and trigger for discussions.

“When patients are struggling, we want to know why – what is getting in the way, what kinds of support or education might help them, and what the team can do to keep them connected to their care,” Ms. Gray says.

Structured Practice and Accountability

IBD University typically takes place over a four year period, but the exact timelines can vary depending on patient readiness and follow-through. Ms. Gray meets with each patient at regular intervals to review progress toward the contract goals and reinforce good behaviors.

The MyCHP digital health portal figures prominently in the process. It serves as a communication tool and a skills platform. “So much in health care comes down to effective communication,” Ms. Gray says. “Not everyone is great at it at first. But it is a skill that can be learned through practice, so we place a great deal of emphasis on understanding one’s condition, history, and needs and how to effectively communicate about it with health care providers.”

Documentation in the patient’s electronic medical record includes the signed IBD University contract and progress notes indicating the patient’s current level of independence. The IBD Center team uses these notes to coordinate messaging across providers and to align expectations with the patient’s family or other caregivers.

Graduation and Next Steps

After a patient has met all expectations consistently and demonstrated confidence in managing their care, they receive a printed IBD University diploma (pictured right) and are formally documented as a graduate in their medical record. Graduation is often timed to coincide with the final stages of transition planning or the patient’s transfer to adult care.

The diploma itself is simple but symbolic. It’s a way to mark a developmental milestone and acknowledge the effort it took to move from dependent care to self-management. For some patients, it is their first formal recognition of this shift.

“Graduation is a chance to say, ‘You’re doing this. You’ve got it,’” Ms. Gray says. “That validation matters a lot to our patients and their families.”

Dissemination and Future Work

The IBD University initiative created by Ms. Gray and colleagues has drawn national interest, with abstracts accepted at several conferences in 2025, including Digestive Disease Week (DDW) and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition/Association of Pediatric Gastroenterology and Nutrition Nurses annual meeting. The team’s poster presentation at DDW earlier in 2025, titled “Implementing a Novel Patient-Provider Code of Conduct for Young Adults With Inflammatory Bowel Disease (IBD) to Better Facilitate Transition to the Adult IBD Centers: A Pilot Study,” showcased some early results of the program. In the pilot phase, all 50 patients approached signed the agreement, and no missed appointments were reported in the 60 days following enrollment, suggesting early success in promoting accountability and continuity of care.

“We’ve had uniformly positive feedback and comments from providers across the country when we present our program’s structure, goals, and success so far,” Ms. Gray says.

Looking into the future, Ms. Gray and the IBD Center will continue to refine the structure and metrics of the program. One goal is to better track outcomes longitudinally, including appointment adherence, MyCHP portal usage, and successful transfer to adult care. Another area of work being planned is to develop formal materials that can be shared with other institutions that may want to replicate and adapt the idea to their own program.

“There’s a need for this everywhere,” Ms. Gray says. “We’ve all seen pediatric IBD patients fall through the cracks at this age. If we can catch them before that happens and give them the tools they need, we can likely change the trajectory of their care.”

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