Abstract
OBJECTIVES: Little is known about the experience of adolescents and young adults (AYA) with disorders of gut-brain interaction (DGBI) who transition from pediatric to adult gastroenterology care. In this two-part study, we used quantitative and qualitative methods to: (1) assess incidence of optimal versus suboptimal transitions of care for AYA with DGBI, (2) characterize health and quality of life effects of the transition, and (3) identify barriers and facilitators for optimal transition of care. METHODS: In Part 1, we conducted a retrospective review of AYA referrals to our adult neurogastroenterology clinic who had transitioned from pediatric gastroenterology care (N = 109, 17-23 years, 72% female). We collected demographic, psychosocial, and healthcare utilization data to determine rate and risk factors for suboptimal transitions. In Part 2, we recruited 24 AYA and parents (n = 19 AYA, n = 5 parents) for completion of a survey and semistructured interview, which was analyzed using validated rapid qualitative analysis method. RESULTS: In Part 1, 20% (22/109) of AYA met the criteria for suboptimal transition of care, which was associated with treatment adherence concern and functional impairment. In Part 2, we identified two principal themes: (1) AYA's health and quality of life are impacted during the transition, and (2) parental involvement and collaboration with pediatric gastrointestinal are facilitators to successful transitions, whereas access to care and practice style change are barriers. CONCLUSION: AYA with DGBI have high rates of suboptimal care transitions, affecting their health and quality of life. Our study highlights the need for a comprehensive approach that incorporates parents and pediatric providers.