Improving Care Integration of Youth with IBD Using Stakeholder Input

Principal investigator: Itishree Trivedi, MD

Graduating from high school. Going away to college. Getting that first job. For many, these milestones mark the transition from childhood to adulthood, with parents and their children diligently preparing for them as they arise. Yet a young adult patient’s move from beloved pediatrician or family doctor to an unfamiliar adult care specialist is often abrupt. Learning to be in charge of your own health can be challenging, especially for those with chronic illnesses.

Inflammatory bowel disease (IBD), often identified as ulcerative colitis or Crohn’s disease, affects 1.4 million Americans. About 30 percent of IBD patients are diagnosed with the disease before age 18. The journey from adolescent to adult can be bumpy for anyone, but IBD comes with its own set of hurdles. Typically inhibiting physical growth and often causing social and developmental stresses, the disease can lead to missed doctors’ appointments, increased use of emergency rooms, and higher healthcare costs.

“Transition programs” to prepare youth for adult care have been used for patients with conditions such as Type 1 diabetes mellitus and organ transplantation. Requiring “buy-in” from healthcare practitioners to be successful, these programs help young adults bridge the transition gap. They’ve been shown to prevent the worsening of disease and reduce hospitalizations. Supported by a grant from the Digestive Health Foundation, a young clinical investigator in Northwestern Medicine’s Division of Gastroenterology and Hepatology now intends to do the same for young adults with IBD. Adapting the GotTransition toolbox (developed by the Center for Health Care Transition Improvement), Itishree Trivedi, MD, plans to develop the first such program specifically geared toward improving the integration of this vulnerable patient population into adult gastroenterology care.

Dr. Trivedi and her team will take a systematic approach to modifying the GotTransition toolbox to meet the specialized needs of IBD patients and their families. First, they will seek to better understand current health services utilization of this target group by looking at rates of hospital and emergency room use, among other factors. Then, they will survey young IBD patients at the Northwestern IBD Center to assess their satisfaction with the healthcare they receive. Finally, focus groups will be used to learn how the transition to adult care affects patients, caregivers, and clinicians.

A tailored GotTransition toolbox has the potential to improve quality of life for young adults with IBD, by helping them take responsibility for their own good health.

Skills

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August 8, 2016