A public health led, statewide approach to improving emergency department care for individuals with sickle cell disease—North Carolina

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Abstract Sickle cell disease (SCD) is a lifelong condition affecting approximately 100 000 individuals in the United States. It causes progressive organ damage through hemolysis, vaso-occlusion, and chronic inflammation. Patients frequently present to emergency departments (EDs) for acute complications, most commonly severe pain episodes. Unfortunately, acute care encounters are often characterized by negative interactions between patients and providers, fostering mutual distrust and dissatisfaction. In response to community input, the North Carolina Governor’s Council on Sickle Cell Syndrome Medical Research Committee partnered with medical centers, the North Carolina Department of Health, and community-based organizations to implement standardized guidelines for SCD care statewide. Using state-level data, the initiative targeted the 20 ED sites with the highest visit volumes. Each site received an implementation toolbox, developed by the committee and designed to improve emergency care. Following formal outreach, expert consultants engaged site representatives to review the toolbox and initiate discussions on best practices, including Emergency Severity Index (ESI) triage protocols and individualized care plans. Monthly expert consultation (committee members) follow-up calls were established to monitor progress and sustain engagement. Additional efforts were directed toward sites that did not initially respond to formal outreach. To further support the care of patients with complex health care needs who receive care at multiple institutions, we established a multi-institutional monthly virtual patient care conference focused on pain management in high needs patients and sites were invited to participate. This initiative reports a public health program to improve ED care for persons living with SCD.

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