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Measuring Ambulatory Racial and Ethnic Neurologic Disparities With the Axon Registry
Richard T Benson1, Sarah M Benish1, Gregory J Esper1
1National Institute of Neurological Disorders and Stroke (RTB), NIH, Bethesda, MD; Department of Neurology (SMB), University of Minnesota, Minneapolis; Department of Neurology (GJE), Emory University, Atlanta, GA; Department of Neurology and Rehabilitation Medicine (BK), University of Cincinnati, OH; Department of Neurology (NR), University of California, San Francisco; Department of Neurology (EM-L), University of Miami, FL; Department of Neurology (OAH), University of Texas, Houston; Department of Neurology (TTAP), Kaiser Permanente Colorado, Denver; Verana Health (MR, AT, AL, SKK), San Francisco, CA; American Academy of Neurology (KBL, AM, BS), Minneapolis, MN; and Department of Neurology (LKJ), Mayo Clinic, Rochester, MN.
Background And Objectives:
The primary objective is to examine potential racial and ethnic (R/E) disparities in ambulatory neurology quality measures within the American Academy of Neurology Axon Registry. R/E disparities in neurologic US morbidity and mortality have been clearly documented. Despite these findings, there have been no nationwide examinations of how ambulatory neurologic care affects these negative health outcomes.
Methods:
This was a retrospective nonrandomized cohort study of patients in the AAN Axon Registry. The Axon Registry is a neurology-specific outpatient quality registry that collects, reports, and analyzes real-world deidentified electronic health record (EHR) data. Patients were included in the study if they contributed toward one of the selected quality measures for multiple sclerosis, epilepsy, Parkinson disease, or headache during the study period of January 1, 2019-December 31, 2019. Descriptive analyses of patient demographics were performed and then stratified by race and ethnicity.
Results:
There were a total of 633,672 patients included in these analyses. Separate analyses were performed for race (64% White, 8% Black, 1% Asian, and 27% unknown) and ethnicity (52% not Hispanic, 5% Hispanic, and 43% unknown). The mean age ranged from 18 to 55 years, with 61% female and 39% male. Quality measures were chosen based on completeness of R/E data and were either process or outcomes focused. Statistically significant differences were noted after controlling for multiple comparisons.
Discussion:
The large proportion of missing or unknown R/E data and low overall rate of performance on these quality measures made the relevance of small differences difficult to determine. This analysis demonstrates the feasibility of using the Axon Registry to assess neurologic disparities in outpatient care. More education and training are required on the accurate capture of R/E data in the EHR.
