Abstract
Transition of care from pediatric to adult hematology for adolescents and young adults (AYA) with sickle cell disease (SCD) is a complex process and occurs during a period of disease progression. The resulting increase in morbidity and mortality warrants careful attention. Effective transition of care requires multiple transfers: knowledge from provider to patient, operations (or decision-making) from parent to patient, and clinical information between pediatric and adult health care teams. Electronic medical records (EMRs) provide an opportunity transfer information in a standardized fashion but have been used with variable success. To optimize the use of the EMR to improve the success of transition, we need to understand the quantity and quality of data available through the EMR. In this study, we describe the status of patients with SCD who have transferred care from the perspective of pediatric and adult hematology programs.
We conducted a pilot retrospective chart review of AYA with SCD aged 18-26 years who transitioned from pediatric to adult hematology between 2017-2023. We collected data from two pediatric and two adult hematology programs. Pediatric providers reported on AYA who left their programs during the study timeframe. Adult providers reported on AYA who entered their programs during the same period. We defined the transition period as the time between the last pediatric and first adult visit. We collected demographic data, assessed the use of EMR-based transition support tools, the duration of the transition period, and health care utilization (Emergency Department visits and hospitalizations) during the transition period. Where EMR data was not available, additional data were collected from local registries.
All participating sites were urban medical centers without an active lifespan program. The number of active patients in the participating programs ranged from 150 to 1300 patients. Review of the EMR highlighted challenges with tracking patients across systems. Many data elements, especially verification of appointment dates, were not readily available in the EMR.
A total of 139 patients were included in this analysis, including 47 subjects from adult hematology and 92 from pediatric hematology programs. The median age at transition was 21.7 years (IQR: 19.3, 23.0). The median rate of Emergency Room usage during the period of transition was 3 visits per year for AYA reported from either pediatric or adult programs. However, the duration of the transition period differed significantly when reported from pediatric EMR/registries compared to reports from adult EMR/registries. Based on the available data, the median duration of the transition period was 66 days when reported by an adult hematology program and 258 days when reported by a pediatric program (p <0.001). The consistent rate of emergency room visits recorded by pediatric and adult providers affirms the continued disease burden and the potential for data to be shared across programs. The difference in the duration of the transition period suggests a limitation in the critical transfer of information between Hematology clinics.
EMR tools may have a role in facilitating transition, but standardized tools should be developed to provide consistent information across health care centers. Our retrospective review highlights the current reality of lost data and patients being lost-to-follow-up during the period of transition from pediatric to adult hematology care. The implementation of a formal system of communication between referring pediatric and receiving adult hematologists who care for AYA with SCD could greatly increase the success of transition by shortening the gap between transition care.
