IBD Program Eases Transition From Pediatric to Adult Care

Megan Brooks

October 20, 2016

For children with inflammatory bowel disease (IBD), the transition from pediatric to adult care can be a challenge but a dedicated program can help, early results from the Berliner Transitions Program suggest.

The program was established because "the German government realized that transition is a problem," said Britta Siegmund, MD, from Charité–Universitätsmedizin Berlin, who is a member of the program's task force.

Each child is enrolled in the program for 2 years, during which time there is close collaboration between pediatricians and adult care providers.

Dr Siegmund presented the early results at United European Gastroenterology Week in Vienna.

Case Manager Leads the Way

Each child enrolled in the program is assigned a case manager, who takes care of all the practical issues, maintains contact with the patient, and ensures that the patient is comfortable throughout the transition. When needed, the patient can see both the pediatrician and the new treatment team during the transition period, Dr Siegmund explained.

The program is designed to help children with many long-term pediatric conditions, such as type 1 diabetes, epilepsy, and asthma as they change over to adult care.

Over time, the program builds young patients' understanding of their disease to prepare them and their families for the transition. "So far, our experience demonstrates that the young people who have taken part have arrived into adult care very positively," Dr Siegmund said in a statement.

The incidence of inflammatory bowel disease has been rising since the middle of the 20th century. Currently, an estimated one in four children receive the diagnosis. A "smooth and supportive transition" from pediatric to adult care can help young adults "lead normal lives and can prevent the disease from affecting education and lifestyle," said Dr Siegmund.

"The program offers several tools that can be applied in other countries," she told Medscape Medical News. She said she hopes that the success of the program will provide a framework that can be incorporated across the rest of Europe.

One of the factors critical to the success of the program is to ensure that children transition into the "care of specialists who really understand adolescents and are willing to invest the time in their care," she added. "All physicians who agree to take part in the program fulfill this requirement and are committed to the success of the project."

Barriers to Transition

"The transition of care from the pediatric world to the adult world is challenging for several reasons," said Mohammad El-Baba, MD, chief of gastroenterology at the Children's Hospital of Michigan in Detroit.

"Some of the most common barriers are related to patient readiness and development," he told Medscape Medical News. "Other barriers include parent or physician reluctance to transfer care. Many parents have significant concerns about the transition to adult IBD care and can be quite attached to their child's pediatric IBD provider."

Transitions can be complicated when pediatric providers who have a strong bond with patients and their families do not believe that adult caregivers will provide the required psychosocial support and care to an adolescent patient with a chronic illness. And "adult caregivers often see adolescents with IBD as immature, and their families as very involved and demanding," Dr El-Baba said.

"There may also be barriers around the identification of an appropriate provider for a patient, particularly if he or she has limited options related to insurance," he noted.

At Children's Hospital of Michigan, the transition is done on an individual basis. "When pediatric providers deem patients ready for transition, they are referred to adult providers. Transition usually happens at 18 to 20 years of age," he reported.

But for patients with inflammatory bowel disease, the transition process varies from center to center, "and specific guidelines and best-practice models for the transition of care are lacking," Dr El-Baba explained.

"There is currently no consensus regarding the timing of transition, the tools, or the standards that are the most effective," he said.

Recommendations and Resources

General recommendations for transition have been issued by several societies, including the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition; the American Academy of Pediatrics; the American Academy of Family Physicians; the American College of Physicians; and the Transitions Clinical Report Authoring Group.

Resources and tools are also available to adolescents during the transition process. For example, the Crohn's & Colitis Foundation of America has developed several tools for patients transitioning to adult care, including an online database of providers in the United States who treat inflammatory bowel disease, which can be valuable for young patients moving or going away to college.

In addition, resources for patients, families, and providers about the transition process are available on the IBD U website and on the Got Transition website, Dr El-Baba said.

Dr Siegmund and Dr El-Baba have disclosed no relevant financial relationships.

United European Gastroenterology (UEG) Week 2016. Presented October 18, 2016.

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