Descriptive epidemiology of sickle cell disease in Tennessee: population-based estimates from 2008 to 2019

Abstract

IntroductionThe Sickle Cell Data Collection Program (SCDC) is a multi-state initiative utilizing multiple data sources to estimate population prevalence of Sickle Cell Disease (SCD) with the goal of improving quality of life and health outcomes among those affected. SCDC in Tennessee operates as a multi-site, interdisciplinary team using multiple sources of data to learn more about SCD in Tennessee.MethodsThis analysis characterizes the number, demographics, and proximity to specialty care of individuals living with SCD in Tennessee who have been covered by Medicaid or identified by newborn screening. We compared demographic patterns of individuals with SCD living in rural areas with those living in urban areas, as well as those living in counties contributing more than 50 individuals to the cohort, respectively, to demographic patterns of individuals with SCD in the rest of the state, using Chi-Square or Fisher’s exact tests.ResultsFindings show that overall, 66.1% of all SCD patients identified through newborn screening were residents of Davidson and Shelby counties at the time of birth, and 81.8% of those identified through Medicaid claims lived in Davidson, Hamilton, Knox, Madison, Montgomery, Rutherford, or Shelby County. In total, 8.6% of the cohort lived in rural settings and 91.4% in urban settings. Of the 95 counties in Tennessee, 75 (78.9%) had at least 1 to 40 residents with SCD, yet of these 75 counties, less than half had a hematology/oncology trained provider practicing within them.DiscussionThis analysis brings us closer to understanding how many people with SCD live in rural areas of Tennessee and the challenges they face in seeking the care needed to adequately manage their disease. Acute healthcare utilization remains highest in the young adulthood years. This analysis provides insight into how healthcare utilization patterns among individuals with SCD vary by age group and over time.