Acute Healthcare Utilization for Individuals with Sickle Cell Disease in Michigan

Abstract

Background

Sickle cell disease (SCD) is a rare, genetic disorder in the United States associated with significant morbidity and early mortality. However, population-level information regarding SCD is unknown in part due to highly fragmented care and the lack of a centralized registry. The Michigan Sickle Cell Data Collection (SCDC) Program is a CDC-funded, population-based surveillance system that aims to longitudinally collect data from multiple sources to better understand the prevalence, healthcare utilization, and health outcomes among persons living with SCD

Objective

Identify all individuals living with SCD in Michigan and characterize their acute healthcare utilization (i.e., emergency department (ED) visits and inpatient admissions).

Methods

The Michigan SCDC program identifies people living with SCD and their healthcare utilization through combining longitudinal, individual-level data from a wide range of sources, including newborn screening, vital records, Medicaid claims, hospital and emergency discharge data, and clinic data. Demographics (age group, sex, geographic location) were assessed for anyone living in the state with SCD in 2017. To evaluate healthcare utilization, ED visits and inpatient admissions for each person were identified from Michigan Medicaid and statewide discharge data, then deduplicated by visit date. Number of visits for each healthcare utilization measure, as well as visit rate per person, were assessed by age group across the lifespan, with a focus on the following three age groups: <10, 10-19, and 20-29 years of age.

Results

Overall, there were 3,331 individuals with SCD living in Michigan during 2017. Although the majority (80%) of individuals lived in six counties (Wayne, Oakland, Macomb, Genesee, Saginaw, and Kent), over half of Michigan’s 83 counties were home to at least one individual with SCD. Of those living with SCD, 2,104 (63%) were under 30 years of age. Those under the age of 30 comprised 55% of the total ED visits and 62% of the total inpatient admissions. The ED admission rate for each of the three age groups (<10, 10-19, and 20-29 years) was 0.93, 1.24, and 4.58 visits per person, respectively. The inpatient admission rate for each of the respective age groups was 0.76, 0.88, and 1.36 visits per person.

Conclusion

The SCDC program presents an innovative approach to assess population-level data for SCD in Michigan. Our findings show increased healthcare utilization for the 20-29 year age group, suggesting a need for better understanding of transition from pediatric to adult care settings within this population.