Approximately one-third of patients with inflammatory bowel disease (IBD) are diagnosed in childhood or early adolescence. As these individuals enter adulthood, a smooth transition out of the pediatric setting is important — both to ensure effective continuity of care as they begin to see new providers, and to empower them to take ownership of their ongoing health care needs.
“Too often, there is not enough focus on making sure young adults with IBD are able to adjust to an environment in which there is a lot more onus to make their appointments, ensure they’re receiving their medications, and follow up with their doctors,” says Hassan W. Hamandi, MD, director of the Pediatric Inflammatory Bowel Disease Program and health sciences clinical associate professor in the Division of Pediatric Gastroenterology, Hepatology, and Nutrition and the UCLA Vatche and Tamar Manoukian Division of Digestive Diseases.
With that in mind, the Center for Inflammatory Bowel Diseases has launched a Pediatric-to-Adult Transition Clinic, focusing on IBD patients from about age 18 to 26.
As a pediatric gastroenterologist who also has young adult patients, Dr. Hamandi will help to make the transition easier by overseeing the clinic as patients begin to interact with adult ancillary staff and experience other components of an adult health care setting. The transition clinic includes a focus on issues specific to the population, such as sexual health, while teaching patients to better understand their medical record and allowing parents to pull back from their child’s care.
For patients with a chronic condition such as IBD that requires ongoing care, the transition from pediatric to adult care can be fraught, Dr. Hamandi notes. Young people are often not used to making follow-up appointments on their own. If they are in college and away from home for the first time, they might not know what resources are available and, after relying on their parents to schedule their care, might not take the initiative. The transition clinic is designed to build that autonomy.
“In many ways, this transition clinic is as much for parents as it is for the young adults,” says Berkeley Limketkai, MD, PhD, health sciences associate clinical professor of medicine in the UCLA Vatche and Tamar Manoukian Division of Digestive Diseases and director of clinical research for the Center for Inflammatory Bowel Diseases, who sees patients at the clinic.
“Going straight from a pediatric to an adult setting can be jarring,” Dr. Limketkai says. “It’s a completely new environment, and it often occurs when these patients are away in college. Parents not only have to worry about their child’s academics, but how they’re doing physically and emotionally. A big part of this clinic is helping to ease those concerns.”
Traditionally, there has been a divide between adult and pediatric GI — with little collaboration or interaction — but studies have suggested that helping IBD patients with the transition improves the quality of care.
“In some institutions, a pediatrician might write a summary of the patient’s history and that’s all that patient goes into adult medicine with — and sometimes there are no records at all,” Dr. Hamandi says. “My goal is to be that bridge, so that providers are on the same page and patients have a period of time where they’re learning to take control of their care.”
