Weill Cornell Registry to Track IBD Patient Outcomes after Transition to Adult Care

December 17, 2015

Over the last two decades, pediatricians have recognized adolescent patients with chronic disease are often inadequately prepared to manage their own medical care upon reaching adulthood. These adolescent patients have demonstrated lower rates of medication adherence and clinical visit compliance across many pediatric subspecialties and are often ill-equipped to navigate the insurance landscape and healthcare system. This lack of preparedness increases their risk of worsening disease, which can lead to poorer clinical outcomes.

Implementation of clinical transition programs and research regarding formal transition programs is scattered. Differing program structures, lack of evidence-based recommendations, varying research methodologies, and limited resources prevent the development of these programs, especially for adolescents with IBD. More prospective and outcomes research is necessary for improvement of transition care. Physicians and researchers in the Division of Pediatric Gastroenterology and Nutrition at the Komansky Center for Children’s Health are looking to provide new insights by creating a research registry to accompany their IBD Transition Program.

Dr. Kimberley Chien leads the adolescent IBD Transition Program at Komansky. With a transition team that includes the patient’s primary gastroenterologist as well as a psychologist, social worker, and other providers, IBD patients are regularly assessed on areas that include psychosocial development, health literacy, disease knowledge, the insurance system and more. Starting at age 14, the transition team works with these patients for several years to ensure they will be ready to successfully transfer to an adult gastroenterologist.

“It’s all about improving our patients’ medical outcomes and quality of life,” said Dr. Chien. “If our team can empower a patient to take part in managing their care early on, they will be able to make better decisions about managing their own disease as a young adult.”

Tracking outcomes on patients passing through this new program is a priority. Dr. Chien and a research team have established an IBD Transition Program registry. Comprehensive data will be collected in the registry, including results of quality of life and transition readiness assessments, demographic data, inflammatory markers, and records of ER visits and hospitalizations. Dr. Chien is working toward inclusion of mental health screenings in the future. The registry’s goals are not only to determine the efficacy of the program at Komansky, but also share insights with the pediatric medical community beyond NYP/Weill Cornell Medicine in order to help pediatric GIs everywhere determine the best approach for transitioning adolescent IBD patients in their practice.

“By creating the registry, we hope we will understand this adolescent population further and identify factors that might play a role in determining their transition readiness,” said Dr. Chien.