Abstract
Background
Sickle cell disease (SCD) is a lifelong hemoglobinopathy associated with serious health complications and most frequently affects people of African, Middle Eastern, and Hispanic descent. The Michigan Sickle Cell Data Collection (MiSCDC) program is a CDC-funded, population-based surveillance system that combines data from multiple sources to understand trends in the population and healthcare utilization of persons living with SCD in Michigan.Objective
Our objective was to demonstrate the feasibility of using MiSCDC to describe the prevalence, demographics, healthcare utilization, and mortality of people living with SCD in Michigan in 2018.Methods
To identify the population and healthcare utilization of persons with SCD, clinic data and state-maintained data sources, such as newborn screening, Michigan Medicaid, Children’s Special Health Care Services, immunization registry, vital records, and hospital discharge databases, were linked and deduplicated on a person-level using LinkageWiz, a probabilistic data matching software. Validated case definitions were used to identify confirmed and probable cases of SCD living in the state in 2018. Demographics were obtained from all data sources and prioritized for use based on an established hierarchy. Number and length of inpatient admissions, number of emergency department (ED) visits, and county of residence were obtained from administrative claims. Mortality was assessed in 2018 using vital records for all individuals with SCD ever living in Michigan.Results
Through combining and deduplicating multiple data sources, we identified 3,505 persons (58% female) living in Michigan with SCD in 2018, with an average age of 28 years (SD=18 years). Over half of the 83 Michigan counties were home to persons living with SCD; most of these persons (64%, n=2,224) resided in southeast Michigan, which includes metro Detroit. On average, people with SCD had 1.2 inpatient admissions (average length of stay = 5.3 days) and 3.1 ED visits. Inpatient admissions initiated in the ED 66% of the time. Approximately 46% of inpatient admissions and 66% of ED visits occurred within 30 days of another inpatient admission or ED visit. There were 44 deaths during 2018; the average age at death was 46 years (SD=18).Conclusion
It is feasible to leverage multi-source data to identify persons living with SCD in Michigan and assess their healthcare utilization. MiSCDC findings can be applied to identify and evaluate programmatic and policy targets aimed at improving the quality of life for persons living with SCD with an overall goal to address health disparities among this systematically marginalized population.Categories: Conference Abstracts/Posters