For adolescent patients with inflammatory bowel disease (IBD) at Penn State Hershey Medical Center, a quarterly pediatric-to-adult care transition clinic has dramatically improved follow-up rates in the adult clinic, reducing no-shows to less than one percent.
“The structured transition program makes the process smoother and addresses the biggest problems that patients and parents encounter when the patient reaches 18 years-of-age,” says Emmanuelle Williams, M.D., assistant professor, Penn State Hershey Gastroenterology and Hepatology, and associate director, Penn State Hershey IBD Center. Together with Tolulope Falaiye, M.D., Penn State Hershey Pediatric Gastroenterology, Penn State Hershey Children’s Hospital, Williams has led the development of the successful program.
The process of transition begins around the age of 12. Transfer to adult care occurs at age 18. A specialized IBD nurse navigator is assigned to follow patients throughout the multi-year transition process. Older adolescents with IBD, under the care of pediatric gastroenterology, complete the Transition Readiness Assessment Questionnaire (TRAQ). At age 18, patients identified as ‘transition-ready’ are presented at a transition conference and have their first adult care visit held in the pediatric clinic location. Their former gastroenterologist performs introductions and is present the day of transfer.
Williams explains, “Patients get a strong message that the pediatric and adult providers are working together to help transfer their care. The nurse navigator provides ongoing, supportive follow-up, guiding patients and families through the transition process.”
Nurse navigators also ensure that proper HIPAA forms are completed, needed laboratory test are performed, and directions to the new adult clinic are provided. When adult follow-up occurs, patients again complete the TRAQ and continue do so until age 21.
Williams says, “Many pediatric IBD cases are very complex. These patients may exhibit lower maturity, delayed puberty, and are still very dependent on their parents for IBD management. This is one of the biggest barriers to successful transition to adult care. Our program is designed to support the patient as they become more independent, while preventing gaps in care that could result in increased disease activity. Our goal is that the whole family transitions well–often this is a difficult process for parents, as well as patients.”
Williams says, “Over the past twelve months, we’ve conducted four transitional care clinics and have received very positive feedback from patients and their families. Moving forward, we intend to collect data about patient satisfaction and clinical IBD outcomes, like the number of ER visits, steroid use, hospitalizations for IBD-related issues, and calls back to the pediatric office.”
Adolescent IBD transitional care is critical during the young adult years, when high levels of good illness management are associated with achievement of important milestones, like pursuing a college education,1 maintaining employment, and living independently. An effective transitional program decreases parental involvement, increases patient maturity, and provides guided follow-up to young adult patients, while limiting gaps in IBD management.2
Emmanuelle D. Williams, M.D.
Associate Director, Penn State Hershey IBD Center Assistant Professor, Penn State Hershey Gastroenterology and Hepatology
FELLOWSHIP: Gastroenterology and Hepatology, University of Florida College of Medicine
RESIDENCY: Internal Medicine, University of Michigan Medical Center
MEDICAL SCHOOL: Jefferson Medical College
1. Almadani SB, Adler J, Browning J, Green EH, Helvie K, Rizk RS, Zimmermann EM. 2014. Effects of inflammatory bowel disease on students’ adjustment to college. Clin Gastroenterol Hepatol. 12:2055-2062.
2. Paine CW, Stollon NB, Lucas MS, et al. 2014. Barriers and facilitators to successful transition from pediatric to adult inflammatory bowel disease care from the perspectives of providers. Inflamm Bowel Dis. 20:2083-91.