Surveillance of Individuals with Sickle Cell Disease in Florida

Presentation Date: 6/9/2024 Presentation Start Time: 1:45:00 PM Background According to estimates, Florida is one of the states with the highest prevalence of sickle cell disease (SCD) in the United States. However, no formal case finding has been performed. Accurate data counts are needed for resource planning, such as healthcare access and coverage policies. The University of Miami received a CDC award to establish the Florida Sickle Cell Data Collection Program (SCDC). The purpose of Florida SCDC is to survey individuals with SCD in Florida in order to understand the demographic characteristics and healthcare utilization rates with the purpose of increasing access to care if they are systemic gaps and promote beneficial changes in healthcare policy. Methods Previously available de-identified Florida Medicaid claims for all individuals with SCD for the years 2018-2021 was used for this analysis. A probable case was defined as a person with ICD-10 codes for SCD who had three or more encounters during the study period. Descriptive statistics (frequencies, median and interquartile ranges [IQR]) were calculated for demographics, including the case distribution according to residence zip codes; the number of hospitalizations, emergency department (ED) visits, and outpatient encounters for all cases, and for SS and SC cases, and the percentage of individuals with SS who had hydroxyurea prescriptions. Results 8,067 individuals were identified, with a median age of 17 years (IQR 25); 57% females. Sixty-two percent were Black non-Hispanic and 5.37% were Hispanic. The rest were from other race or ethnicity, or the information could not be determined (25%) from the available data. Geographic areas with higher number of individuals were Broward County (Nf1,224, 15%), Miami-Dade (Nf1,214, 15%), and central Florida (Nf2,112, 26%). From the total, 4,327 (53.64%) cases had inpatient encounters with a median of 2 inpatient encounters/year. 5,009 (62.09%) had ED encounters with a median of 2 ED encounters/year. There were 4,699 individuals with SS ICD-10 codes and 1,521 with SC ICD-10 codes. Similar percentages of patients with SS and SC had outpatient encounters (89.81% and 85.93%) and ED visits (67.84% and 62.33%), respectively. The percentage of patients with SS (67.72%) was higher than the percentage of patients with SC (39.71%) who had inpatient encounters. Only 28.62% of individuals with ICD-10 pertaining to hemoglobin SS were prescribed hydroxyurea, and they were equally distributed between pediatric age group (19 years and younger) and adult age group (older than 19 years of age). Conclusions For the years 2018-2021, Florida Medicaid database contained over 8,000 individuals with SCD according to pre-established identification criteria. About half of the cases lived in the Greater Miami area and in central Florida. In comparison to individuals with SC, those with SS were more likely to have hospitalization encounters. However, the use of hydroxyurea was sub-optimal with only 28% being prescribed, presenting an opportunity for improvement. We acknowledge the limitations of working with a claims database including challenges with ICD 10 coding for specific SCD genotypes, and that Medicaid database does not capture all individuals with SCD living in Florida. In the future, we will expand Florida SCDC to include all insurance database for a more robust surveillance and will evaluate whether provider availability or distance between patient and provider could be factors which may influence utilization and prescription rates.