P372 Barriers and facilitators of the transition from paediatric to adult care in inflammatory bowel disease: A Western Canadian perspective

Abstract

Abstract Background Patients diagnosed with inflammatory bowel disease (IBD) in childhood/adolescence face additional challenges compared to those diagnosed in adulthood, including more extensive disease and higher risk of complications. The need to undergo transition from paediatric to adult care is associated with an increase in health care utilization and a decrease in adherence to medical appointments and medications. An effective transition may reduce these negative impacts, but there remains a need to engage the stakeholders involved in transition to identify ways to improve the transition process. This study aims to describe the perspectives of key stakeholders - patients, parents, and health care providers - on barriers and facilitators of a successful transition from paediatric to adult care. Methods We conducted a qualitative description study informed by naturalistic inquiry. Patients, parents, and providers from Western Canada were recruited using purposive and snowball sampling for a virtual semi-structured interview. Interviews were recorded, transcribed, and then analyzed by latent content analysis. Results We interviewed 17 patients, 13 parents, and 15 providers. Preparedness as a facilitator was the only theme to emerge across all groups. Groups described preparedness as knowing disease history (patients & providers), expectations of adult care (providers), and having a peer support program (parents). A supportive adult care team was identified as a facilitator by patients (n=10) and parents (n=4) who described an adult care team as one with open lines of communication, and one that is welcoming and caring. Additional facilitator themes included patient characteristics (i.e., patients who were mature, organized, and independent), and supportive parents and home environment, where a patient’s self-confidence and ability to advocate for themselves was encouraged. A barrier theme of patient factors was characterized by providers (n=8) and parents (n=4) as patients in denial of their IBD or who had mental health comorbidities. In the theme of hovering parents and family factors, providers (n=12) described parents who were reluctant to transfer disease responsibility to their child, and families with economic and/or personal challenges. Additional barrier themes included the need to navigate a new health care system and travel to clinic. Conclusion The results suggest a uniform agreement is necessary amongst stakeholders to ensure the development of resources aimed at preparing patients. Our study found differences in how stakeholder groups characterize the barriers and facilitators of transition. Future research should engage multiple stakeholder groups in designing transition interventions and supports for patients with IBD.