Transitioning Children With IBD to Adult-Centered Care

Children and adolescents who have been diagnosed with inflammatory bowel disease (IBD) benefit from child-centered care up until young adulthood, at which point they should be transitioned to an adult care provider, according to Jacob Kurowski, MD, a pediatric gastroenterology specialist at Cleveland Clinic Children’s, and Jessica R. Philpott, MD, PhD, an adult care gastroenterology provider at Cleveland Clinic. The two work together in a “transition clinic” to ease children from pediatric to adult-centered care beginning around 18 years old and into to the early 20s depending on the individual.

“We have been using a joint clinic successfully for about a year at Cleveland Clinic,” says Dr. Kurowski. Having a large program comprised of pediatric and adult providers along with dedicated psychologists and nutritionists housed in the same location represents a significant advantage for patients: “We all work in the same electronic medical record, which allows for record sharing and enhanced conversation to address patient needs on a deeper level,” says Dr. Philpott. “In addition, our patients typically stay within the Cleveland Clinic system, which permits greater continuity of care.”

About 25% of patients with IBD are diagnosed before the age of 20, indicating that a large group of patients will need to transition to adult care. “Frequent discussions with kids about transferring the responsibility for their care from their parents should start in adolescence, “ advises Dr. Kurowski, along with education about their disease at age-appropriate levels of understanding. “The majority of pediatric patients with IBD don’t actually transition until after they graduate from college or in their early 20s, since they are facing a lot of new challenges such as where they are going to live, insurance issues and the like,” he says, and ”in addition to the many challenges they face with IBD”.

Adds Dr. Philpott, “There are two aspects to the transition: The physical move from the pediatric office to the adult care office, which is a visible event, and the development of enough maturity so they can take over the responsibility for their care from their parents and be the leader of the care team. The latter is a more gradual process, and the two don’t always happen at the same time.”

Signs a child is ready to transition to adult care

There are several tools to assess developmental readiness for transitioning that are recommended by the American Academy of Pediatrics, says Dr. Kurowski. Most prominent among these is the Transition Readiness Assessment Questionnaire (TRAQ), a non-disease-specific tool that helps providers assess if patients are independent of their parents, have the ability to navigate the health care system, have knowledge of their disease and the medications they are receiving, can talk with health care providers about the disease and its challenges, and can perform activities of daily living. Another useful, more specific tool is the North American Society for Pediatric Gastroenterology, Hepatology & Nutrition (NASPGHAN) Healthcare Provider Transition Checklist, which provides guidance for both patients and health care team members on developmental touchstones in regard to knowledge, responsibilities, independence and taking charge.

At Cleveland Clinic, once pediatric patients are determined ready to transition to adult care, Drs. Kurowski and Philpott meet jointly with patients to go over what will be different for them in terms of adult care and what’s expected of them, and to answer any questions. After that visit, patients go on to see the adult provider alone. “Cleveland Clinic is one of the few places that can do joint visits like this,” says Dr. Kurowski, “which can help patients be more successful and less resistant to transitioning to a new physician after developing a close bond with a pediatric provider.”

In preparing to receive pediatric patients, Dr. Philpott advises that adult providers gain knowledge about adolescent development and mental health issues, given that teens with IBD have a greater risk of anxiety and mood disorders as well as difficulties with educational and vocational advancement compared to their healthy peers. “Pediatric IBD patients are complex, and often their psychosocial needs are greater than their medical needs,” concurs Dr. Kurowski, who suggests lining up mental health care professionals and nutritionists to assist in treatment.

Post-transition success is marked by care that that is seamless with no lapses in medications, hospitalizations or flareups of disease in the year after transition, concludes Dr. Kurowski. An unsuccessful transition, on the other hand, is characterized by a patient who returns to the pediatric provider or one who is lost to follow up. “Transition care has been identified as an area in need of quality improvement,” he says, “and we are proud that our transition clinic is benefitting our patients so they can go on to be functioning adults with well-managed IBD.”