Creation and analysis of a transition process and transfer registry : a collaborative effort of pediatric and adult rheumatologists

Background: The transfer of care from pediatric to adult rheumatology is a timeframe with well-established risk for poor outcomes. A method to identify and track patients before and after transfer of care is necessary for assessing outcomes, identifying risk factors, and developing interventions to improve outcomes. Objective: The aim of this study was to develop a transition process, including the creation of a transfer registry, to identify variables associated with delayed and failed transfers of care from Children's Hospital Colorado (CHCO) Pediatric Rheumatology (PR) to University of Colorado (UC) Adult Rheumatology. Design/Methods: In this retrospective, single-health system cohort study, 59 patients ≥ 18 years old with active transfer referrals to adult rheumatology placed between 1/1/20 and 12/1/21 were identified. Thirty of these patients had a plan to transfer to UC and were included in the study. A collaborative transition committee consisting of CHCO and UC rheumatology care team members created a transfer registry and a novel complexity score (Figure 1). Demographics, disease activity, and compliance with care plans were collected by chart review. A complexity score (CS) was tabulated for each patient. The outcome variable was time to transfer to UC. Patients were divided into three groups: quick to transfer (≤ 4 months), slow to transfer ( > 4 months), and lost to transfer. Three patients had an appointment with UC scheduled after the study end date and were not included in the analysis. Results: In our cohort, sex, ethnicity, insurance, diagnosis, complexity score, ED visits, and hospital admissions did not significantly differ between the 3 groups. Patients who were quick to transfer had significantly more active disease and number of medical problems. These patients had lower mean number of no-shows to PR and mean duration between their last 2 PR appointments compared to patients who were slow to transfer (Table 1). No significant difference in predictor variables was found between patients who completed transfer and who were lost to transfer (Table 2). Conclusions: We created a pediatric/adult rheumatology transition committee and a standard process for identifying and tracking patients who transfer to adult care within a single-health system. Limitations include a small cohort size and use of an unvalidated complexity score. The establishment of a collaborative transfer process and transfer registry holds promise for identifying predictor variables associated with successful transfer of care to adult rheumatology that could inform quality improvement interventions and improve patient outcomes.