(Itishree Trivedi, MD) Adaptation of a Quality Toolbox for Integration of Young Adults with IBD in Adult-Centered Care

The incidence and healthcare burden associated with inflammatory bowel diseases (IBD) is increasing rapidly. Especially affected are young adults (YA) since about a third of IBD diagnoses are made in the second decade of life and given the disproportionate increase in rates of pediatric-onset IBD. Similar to other young-onset chronic diseases, outcomes of YA with IBD worsen in this age range with increased hospitalization and emergency department use and decreased access to ambulatory care. Given this, the 2011 Consensus report by national pediatric and adult care organizations emphasized importance focusing on integrating young adults with chronic illnesses into adult-centered care (ACC). Despite this, existing efforts are focused in the pediatric setting with emphasis on preparing adolescents for transition to adult care. These effort are not enough because they don’t account for the large numbers of YA who are diagnosed with IBD after age 18 and hence, are outside the pediatric setting. Additionally, these effort ignore the importance of focusing on integrating YA into ACC and the central role of the adult gastroenterologist. For IBD, no interventions exist that are based in adult gastroenterology and focus primarily on integrating YA with IBD into ACC. This proposal aims answer this gap by using stakeholder input (from patients, families and clinicians) for adaptation of an evidence-based, generic quality improvement framework for integrating youth into adult care (GotTransition™) to the IBD disease-specific context. The applicant will conduct needs assessment to gather stakeholder perceptions on barriers and facilitators to integrating YA with IBD into ACC. Through qualitative analytic methods, this information from stakeholders will be used to systematically adapt the GotTransition framework. This adapted framework will be used to inform the development of a patient-centered IBD ACC Integration toolbox, which will be iteratively refined by stakeholder feedback and undergo feasibility testing. During this pilot award, Dr. Trivedi will develop the prototype of an IBD-specific quality improvement toolbox to foster integration of young adults with IBD into adult gastroenterology setting. Further, pilot testing and implementation of this toolbox will be undertaken in subsequent projects during the next stage of the applicant’s academic career.