Young Adult Patient and Caregiver Perspectives on Transition Readiness in an Inflammatory Bowel Disease Clinic

Background When it comes to readiness to transition to an adult subspecialty clinic, perspectives between patients with inflammatory bowel disease (IBD) and their caregivers may differ and influence the ability to successfully transition. Patients with IBD have been shown to suffer from poor transfers of care. There is a need to more efficiently and accurately assess transition readiness to improve the transfer process.Methods Patients transferring to an adult subspecialty clinic and their caregivers were each administered the Transition Readiness Assessment Questionnaire and IBD Self-Efficacy Scale-Adolescent. Differences between patient and caregiver responses and agreement among each dyad were tested.Results There were 29 dyads of patients and caregivers who enrolled. There was no difference between patient and caregiver total scores. The average level of agreement between patients and caregivers was 78%. There was no association between patient response and their age, gender, ethnicity, age at time of transfer, age at diagnosis, or number of emergency room visits in the prior year.Conclusions Patient-reported readiness to transition to adult care was confirmed by their caregivers using validated readiness assessment tools. As transition clinics must focus on high-yield interventions, a readiness survey of young adult patients without a survey of their caregivers may be adequate. However, as experts in each patient's journey, caregivers may be utilized when setting goals and priorities for a transition readiness program. The surveys used in this study can be used broadly to aid subspecialty clinics that are trying to improve the transition process. This study showed that IBD patients and caregivers agree on topics related to readiness to transition care. The study supports focusing on patient input when assessing readiness to transition to adult IBD care. Graphical Abstract