444 Unmet Need for Additional Resources to Support Successful Transition of Care From Pediatric to Adult Providers for the Management of Eosinophilic Gastrointestinal Diseases

Abstract

INTRODUCTION: Eosinophilic gastrointestinal diseases (EGIDs), including eosinophilic esophagitis (EoE), are chronic conditions characterized by eosinophil infiltration into the gastrointestinal mucosa. Children and adolescents diagnosed with EGIDs typically continue to experience symptoms and require lifelong disease management. Therefore, transition to adulthood necessitates a transition from pediatric to adult healthcare providers. The aim of this study is to better understand perceived challenges, unmet needs, and utility of resources to aid in successful transition of care (TOC) for EGID patients. METHODS: An online survey of adolescents and young adults with EGIDs, ages 15-26 years, or their parents/caregivers, was conducted from Dec 2018 to Jan 2019. Participants were recruited through the online platforms of the American Partnership for Eosinophilic Disorders (APFED). There were no prespecified statistical analyses, as this study was intended to be descriptive only. RESULTS: Forty-one participants completed the survey: 7 patients and 34 parents/caregivers. Survey participants were primarily diagnosed with EoE (81%), diagnosed by a pediatric gastroenterologist (95%), and diagnosed at 5 years of age or younger (44%). Most patients (93%) planned to transition to an adult provider at some point, with ages 18-21 years the most common ages of planned TOC (51%); the remaining 7% stated they did not intend to ever transition and instead remain with their pediatric gastroenterologist indefinitely. All patients perceived potential challenges associated with TOC, with “inability to locate an adult provider” and “new provider changing my current treatment plan” cited most frequently as concerns (Table 1). All patients indicated a need for additional TOC resources, such as a list of local adult providers familiar with treating EGIDs, a designated care coordinator, and a checklist of steps to ensure smooth TOC (Table 2). CONCLUSION: This study identified several potential barriers to successful TOC and highlights the need for additional resources to ensure a smooth transition from pediatric to adult providers for the management of EGIDs. To alleviate concerns that TOC may result in change in treatment plan, implementation of tools that enable efficient transfer of relevant medical history and current management plan may help optimize continuity of care as patients transition into adulthood.