Toward Building a Provincial Diabetes Registry of Children and Youth Living With Diabetes in British Columbia, Canada.

ABSTRACT

OBJECTIVES: Pediatric diabetes health-care providers and decision-makers in British Columbia (BC) have prioritized the creation of a provincial pediatric diabetes clinical registry to improve care quality. Our objective is to build the first BC Pediatrics Diabetes Registry (BC-PDR) for quality improvement and coordination of pediatric diabetes care across the province. METHODS: Patients <19 years of age and diagnosed with diabetes were invited to participate in our study. Recruitment began in 2017 at the BC Children's Hospital (BCCH) and expanded to 6 community-based pediatric diabetes clinics in the Interior Health Authority (HA) in 2019. In response to COVID-19, recruitment shifted from in-person to virtual using an electronic consent system. Patient-level (e.g. age at diabetes onset, ethnicity) and visit-level (e.g. glycated hemoglobin [A1C], blood pressure, diabetes regimen, technology use, medications) data were collected in addition to screening for and presence of diabetes complications. RESULTS: As of January 2021, 635 patients from the BCCH and Interior HA were included in the BC-PDR. From the BCCH, 94% of 590 patients were diagnosed with type 1 diabetes and the median A1C was 7.8% and increased with age. Just under half of the BCCH patients were using insulin pump technology and/or a continuous glucose monitoring system. CONCLUSIONS: Over the last 3 years, we have worked to adapt and operationalize the BC-PDR. The next steps for the BC-PDR include engaging diabetes stakeholders in the development of an electronic benchmarking dashboard along with linkage of the data to patient-reported outcome and experience measures and provincial administrative databases.