From Pediatric to Adult Care: The Pediatric Inflammatory Bowel Disease (IBD) Transition Program

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At NewYork-Presbyterian Komansky Children’s Hospital, an innovative program is enhancing the lives of teens and young adults with inflammatory bowel disease (IBD). Spearheaded by Kimberley Chien, MD, a pediatric gastroenterologist at NewYork-Presbyterian/Weill Cornell Medical Center, the Pediatric IBD Transition Program, the first of its kind in the New York metropolitan area, is a multidisciplinary initiative that prepares young IBD patients for the move from pediatric into adult medicine to improve health and quality of life.

“IBD is comprised of Crohn’s disease and ulcerative colitis. It can present with a variety of gastrointestinal symptoms that include abdominal pain, diarrhea, blood in stools, and poor weight gain,” explains Dr. Chien, whose clinical expertise focuses on the transition care of inflammatory bowel disease patients as well as other chronic gastrointestinal disorders. “Adolescents with IBD face unique challenges that can hamper the successful transition from pediatric to adult health care. Not only are they coping with age-related issues concerning body image and self-consciousness, but they also experience symptoms of their IBD flares that can arise without warning and cause anxiety, stress, embarrassment, feelings of helplessness, and depression. Moreover, many adolescent IBD patients avoid taking ownership of their disease and allow their parents to oversee their medical management. Subsequently, they often have a poor understanding of their disease and how to manage their symptoms, causing them to feel unprepared as they leave their familiar, sheltered pediatric care environment and navigate unfamiliar adult healthcare terrain.”

Dr. Kimberley A. Chien

Dr. Kimberley Chien

“Adolescent IBD patients express difficulty finding the guidance and resources they need to successfully transition to independent, adult-centered care,” continues Dr. Chien. “This can be a critical issue for patients that can ultimately impact their health and quality of life. Studies show that adolescents without access to a formal pediatric IBD transition program suffer more than their counterparts, as evidenced by greater medical non-compliance, emergency room visits, hospitalizations, and medical complications in this population.”

“To overcome these barriers, we have established the Pediatric IBD Transition Program at NewYork-Presbyterian Komansky Children's Hospital to provide continuity of care for IBD patients who are transitioning from the pediatric to the adult medical system,” says Dr. Chien, who serves as director of the program. “This program takes a multidisciplinary approach to enlist the expertise of pediatric gastroenterologists, adult gastroenterologists, nutritionists, psychologists, and social workers to optimize care during this transition period. We collaborate to provide patients with knowledge, self-reliance and self-management strategies that will prepare them for a successful transition to the adult gastroenterology environment and empower them with the knowhow to care for themselves throughout adolescence and beyond.”

Children are eligible for inclusion in the Pediatric IBD Transition Program beginning at age 14 years. “The ability to assume self-care tasks and responsibilities is a dynamic, individualized process,” explains Dr. Chien. “Studies show that early education and awareness are important for a successful transfer of care. However, the exact age at which adolescents are ready to move to self-care depends upon their disease status, their home environment and support system, their neurocognitive development and their psychological, emotional and social maturity. We start the program at age 14 to prepare them, but the age that a patient is transferred to an adult GI provider is ultimately decided by the patient, family, and the pediatric gastroenterologist who often serves as the patient’s primary care physician.”

“Once a patient is enrolled in the Pediatric IBD Transition program, a member of the pediatric IBD transition team meets with the adolescent IBD patient to perform a series of baseline assessments using the Transition Readiness Assessment Questionnaire (TRAQ) and the IMPACT III Health Related (HR) Quality of Life questionnaire. Then, the patient will meet with our social worker who will perform a psychosocial assessment and administers a depression screening to identify and address any potential psychosocial issues that may become barriers to successful transition care,” explains Dr. Chien. “Together with the TRAQ and IMPACT III results, these assessments allow the team to highlight areas of deficiency or concern to create an individualized transition care plan. “Patients also receive homework sheets containing age-appropriate questions that test their knowledge of their disease and evaluate their self-management skills. Moving forward, patients continue to receive the TRAQ and IMPACT III questionnaires, homework sheets, and psychosocial assessments on a regular basis. In addition, the team can incorporate our nutritionist or psychologist if needed.”

“Through these assessments, we hope to identify disease knowledge gaps, transition care skills, and self-management deficits, and in order to help participants improve upon these deficits through education, one-on-one counseling and other interventions,” says Dr. Chien. “To guide our services, we are using an age-based transition checklist created by the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition. This checklist is designed to facilitate the transition process, which involves gaining knowledge and responsibilities in early adolescence (ages 12-14), building on this knowledge and practice greater independence in mid-adolescence (ages 15-17), and, ultimately, taking charge of their own health in late adolescence (age 18 and older).”

For patients heading to college, the program offers a yearly Transition to College seminar that addresses concerns specific to this life-changing event. “This is an interactive patient-centered education night in which patients and their parents learn about various issues they may encounter in college, including dorm life, substance use, dating and peer relationships, accessing health service resources, and the importance of good nutrition while living at college,” says Dr. Chien. “Our patients and their parents leave the event expressing their appreciation for the night and the useful information that they learned.”

Once patients leave the Pediatric IBD Transition Program and move to adult GI providers at the NewYork-Presbyterian/Weill Cornell Jill Roberts Center for Inflammatory Bowel Disease, Dr. Chien encourages patients to keep the team informed of their progress. “After meeting the adult provider, our team will follow up with the patient at a return pediatric GI visit so we can learn how they are doing and how their first experience was with the adult gastroenterologist,” she says. “It’s always extremely rewarding to learn that these patients are thriving and are applying the skills they learned while in the program.”

Now in its fourth year, the Pediatric IBD Transition Program has gained the support of a full-time social worker, a research coordinator, and a nurse practitioner. “We maintain a program registry to evaluate formal transition-care efforts, determine efficacy, and make continual improvements to optimize the effectiveness of the program,” says Dr. Chien. “The registry offers opportunities to research this understudied yet highly desired niche to provide evidenced-based transition care efforts for the pediatric gastroenterology community at large.”

With an eye toward the future, Dr. Chien envisions the expansion of the program throughout the NYP hospital network. “As one of the frontrunners of pediatric IBD transition care, I hope that our program can serve as a transitional care model for other pediatric IBD programs as well as chronic pediatric medical disease programs such as pediatric diabetes or congenital heart disease,” she says. “We are moving toward an era of preventive and personalized medicine, and this program is very much in line with care that optimizes individual health and wellbeing.”