P481 "I’ve been told to drop out of school because I need to focus on my health and that was just devastating to hear.": Experiences of Western Canadian young adults with inflammatory bowel disease transitioning from paediatric to adult care

Abstract

Abstract Background The incidence of patients diagnosed with inflammatory bowel disease (IBD) in childhood/adolescence is increasing worldwide; therefore, in the upcoming years, more patients will need to transition from paediatric to adult care. A smooth transition is essential to ensure continuity of care; however, transition is a difficult time for patients, when increasing responsibility for disease management needs to be balanced with full-time employment or schooling. This study explores the transition experience of young adults with IBD who have transitioned from paediatric to adult care. Methods We recruited young adults with IBD using purposive sampling from two IBD centres in Western Canada for participation in a semi-structured virtual interview. Eligibility required being transferred to adult care within the previous two years and being diagnosed with IBD at least one year before transferring. Interviews were audio recorded, transcribed verbatim, and then analysed with an inductive thematic analysis approach. Results We interviewed 16 young adults with IBD (Table 1). We grouped features of the transition experience described by participants into the following four major themes (Figure 1): 1) Anticipation and preparedness for adult care; 2) New and existing connections; 3) Skill development for disease management; 4) Comparison of adult care to paediatric care. In the first theme, participants described feeling unprepared for and nervous about adult care. In the second theme, participants described the structure of care and noted that adult care had less appointments and the adult care team took a less holistic approach to their IBD care. Subsequent themes focused on developing relationships with the new care team, the importance of existing social supports, and becoming responsible and independent in disease management. Conclusion The results outline four major themes that describe IBD patients’ transition experience. These themes provide insight into aspects of transition described by patients, which can be used to improve patient care. For example, participants characterized adult care as missing elements that were present in paediatric care, suggesting a potential need to prepare patients for care differences and support them through the care adjustments. Overall, this study provides valuable insights into patients’ transition experiences which can be used to inform the development of transition supports and improve patient-centred care.