Objectives of this study are to retrospectively analyze Healthcare Resource Utilization (HCRU) and associated costs in 59 patients diagnosed with SPSD at a large academic center to identify areas for interventions.

We queried Health Data Compass (HDC), an electronic health data repository for a large academic healthcare system, from 2012 through 2022 for all patients ≥ 18-year-old with ICD-10 codes pertaining to SPSD in a recent epidemiology study to define incidence and prevalence of SPSD (Neurology, in press). In this current study, we then used the HDC database in this well-defined SPSD cohort to capture electronic health records from a large academic health system and claims data from the Colorado All Payers Claim Database to further define HCRU in this population.

273 patients met the initial inclusion criteria using ICD-10 codes; 59 were confirmed to have SPSD via chart review. Based on our cohort of 59 patients, the mean age of patients was 49.7 years (SD=12.9), 59.3% were female, and 59.3% were antibody-positive. 81.4% self-identified as White, 8.5% Black, 1.2% American Indian or Alaskan Native, and 6.8 % other. 91.5% self-reported as non-Hispanic. 72.9% had > 1 electromyography/nerve conduction study and 81.3% had > 1 brain magnetic resonance image in our system. Additional data collected includes hospitalizations, emergency room and outpatient visits, laboratory and radiology services, and pharmacy related services to evaluate all-cause and SPSD related HCRU and costs.

Using a well-defined, population-based cohort, we can explore HCRU patterns for patients with SPSD. Understanding the true disease burden of SPSD is fundamental to ensuring optimal patient care, allocating appropriate system resources, and defining standards of care for this rare disease.