Measuring Ambulatory Racial and Ethnic Neurologic Disparities With the Axon Registry
- PMID: 37064590
- PMCID: PMC10101708
- DOI: 10.1212/CPJ.0000000000200132
Measuring Ambulatory Racial and Ethnic Neurologic Disparities With the Axon Registry
Abstract
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.
© 2023 American Academy of Neurology.
Conflict of interest statement
R.T. Benson serves as a voluntary member of the AAN Registry Subcommittee and has nothing to disclose. The views expressed are the authors' own and do not necessarily reflect those of the National Institutes of Health, the Department of Health and Human Services, or the United States Government. S.M. Benish serves as voluntary Chair of the AAN Registry Subcommittee and Member of the AAN Quality Committee and on the AAN Board of Directors and has nothing to disclose. G.J. Esper has received personal compensation in the range of $500–$4,999 for serving as a consultant for NeuroOne Technology Corporation, has received personal compensation in the range of $500–$4,999 for serving as a consultant for Pfizer, has received personal compensation in the range of $500–$4,999 for serving as an Expert Witness for Mitchell Law Group, and reports no other disclosures that are relevant to this manuscript. The institution of B.M. Kissela has received research support from the NIH/NINDS and NCATS. B.M. Kissela reports no other disclosures that are relevant to this manuscript. N. Rosendale has received personal compensation in the range of $500–$4,999 for serving as an Editor Associate Editor or Editorial Advisory Board Member for Neurology. The institution of N. Rosendale has received research support from the UCSF Academy of Medical Educators. N. Rosendale reports no other disclosures that are relevant to this manuscript. E.T. Marulanda-Londono and O.A. Hope have nothing to disclose. T.T.A. Pham is a member of the AAN Registry Subcommittee. T.T.A. Pham has nothing to disclose. M. Roe, A. Torres, A. Lien, and S. Kauwe are employees of Verana Health and have nothing to disclose. K.B. Lundgren and A. Mante are employees of the American Academy and have nothing to disclose. B. Schierman is an employee of the American Academy and has nothing to disclose. L.K. Jones has received publishing royalties from a publication relating to health care and serves as a voluntary member of the Board of Directors with the Mayo Clinic ACO and American Academy of Neurology Institute. L.K. Jones reports no other disclosures that are relevant to this manuscript. Full disclosure form information provided by the authors is available with the full text of this article at Neurology.org/cp.