S1104 Patients and Caregivers Agree on Their Readiness to Transition to Adult Inflammatory Bowel Disease Clinic

Introduction: A “transition of care” is the process of preparing a patient to transfer their medical care from a pediatric GI specialist to an adult provider. The two fields have different approaches to care that can make the transfer challenging. It has been shown that patients, particularly those with inflammatory bowel disease (IBD), suffer adversely from poor transfers of care. Patients’ caregivers are important stakeholders in a successful transition, however data regarding their impact is limited. This cross-sectional study assessed whether there were differences or agreement among patients and caregivers on readiness to transition to adult providers. Methods: From October 2022 through May 2023, young adults transferring from a pediatric gastroenterologist to adult IBD clinic were enrolled. Caregivers were simultaneously enrolled. Readiness to transition was measured using the Transition Readiness Assessment Questionnaire (TRAQ) and the IBD Self Efficacy Scale – Adolescent (IBD-SES-A). Caregivers were asked to answer on behalf of the patient. Normality was assessed using the Shapiro-Wilk test. Non-parametric measures were evaluated using the Wilcoxon Matched Pairs Signed Rank test and parametric measures were evaluated using the Welch Two Sample t-test. Dichotomized agreement between each dyad was measured by taking the sum of congruent responses divided by total responses. The threshold for adequate agreement was 67%. Results: 28 dyads of patients and caregivers enrolled. The mean age of patient was 19 years. 14 (48.3%) were female. 18 had Crohn’s Disease, 9 had Ulcerative Colitis, and 2 had indeterminate colitis. The mean age at diagnosis was 13.2. There was no significant difference between patient and caregiver answers to either survey. Patients and caregivers agreed on average 78% of the time (95% CI: 0.74, 0.82) i.e., 25 of 33 total questions (Figure 1). Conclusion: The management of IBD in young adults requires contribution from multiple stakeholders including patients and caregivers. A successful transition involves the patient assuming control and participating in management of their disease. These results show caregiver perceptions generally agree with the patient. Caregiver input may be influential in designing an effective transition program. These results do not support the notion that caregivers’ feelings differ significantly from the young adults. Clinicians may consider caregiver input as a reliable surrogate and useful ally during transfer of care.Figure 1.: Likert responses to the IBD Self-Efficacy Scale Adolescent. Percentages at the far left and right reflect combined "strongly disagree"/"disagree" and "strongly agree"/"agree" responses, respectively. Percentages for neutral responses are in the middle. Items 3 and 5 are reverse-scored.