Patient and Caregiver Perspectives on Transition and Transfer

Little is known about the needs of adolescents with inflammatory bowel disease (IBD) with regard to transition, and how well those needs align with guidelines put forth by the American Academy of Pediatrics (AAP). This study examines perspectives on transition among young IBD patients and their caregivers. Surveys were mailed to 370 adolescent IBD patients, aged 12 years and older, and their caregivers. Most respondents endorsed ages 16 to 17 years as the best age to initiate discussions about transition, and age 18 years or older as the best age to transfer care. Independent self-management by patients was selected as the primary marker of transition readiness, while worry of starting over with a new provider was a primary barrier to successful transfer. Overall, the needs of youth with IBD and their caregivers are largely aligned with AAP best practice recommendations for transition. Further examination into patient needs is essential to inform transition planning efforts and identify targets of intervention.