Epidemiologic burden of Sickle Cell Disease: Evaluating Healthcare Utilization of Persons with Sickle Cell Disease in Delaware

We aim to undertake an epidemiologic assessment of the SCD population in Delaware using statewide surveillance data. We will partner with the Delaware Sickle Cell Disease Collection Program (DSCDC) and leverage the surveillance data compiled by the program. The DSCDC brings together major healthcare systems, clinical experts, and data sources for patients with sickle cell disease (SCD) across the lifespan. Our collaboration will capture data for an estimated 90% of all patients with SCD within the program infrastructure. The data sources include the Delaware all-payer claims database anchored by the Delaware Health Information Network (DHIN), State Medicaid, vital records, newborn screening program (NBS), hospital discharge and emergency department records, and clinical records. We will use a validated case definition based on specific International Classification of Diseases, Ninth Revision - Clinical Modification (ICD-9 CM), and Tenth Revision codes (ICD-10) to identify persons with SCD from these sources. Specifically, we will require a laboratory-confirmed diagnosis to count an individual as a confirmed SCD case. In contrast, probable cases will be defined as those with no laboratory-confirmed diagnosis but with three or more inpatient, emergency department (ED), or outpatient healthcare encounters, including ICD-9 or ICD-10 diagnosis codes indicating SCD within five years. We will create a ten-year (2013-2022) record of confirmed and probable SCD individuals separately. We will describe the demographic characteristics of each group, including sex, race, ethnicity, age, and location (county and region). We will conduct a cross-sectional analysis of acute care utilization patterns of all individuals with SCD, focusing on individuals transitioning care from pediatrics to adult medicine. Additionally, we will evaluate the variability in access to comprehensive SCD care by exploring age and regional variability in emergency departments' reliance on the SCD population. The project will also boost local capacity in SCD research, preparing junior investigators to pursue further funding to investigate the epidemiology of chronic complications among persons with SCD. The overall findings from this project will provide the foundation for implementing intervention programs to improve access to care, reduce disparities, and enhance the overall quality of life for persons with SCD.