Examining the National Representativeness of the Axon Registry: A Neurology-Specific Patient Registry.

BACKGROUND AND OBJECTIVES: The objective of this study was to determine the external validity of the Axon Registry by comparing the 2019 calendar year data with 2 nationally representative, publicly available data sources, specifically the National Ambulatory Medical Care Survey (NAMCS) and the Medical Expenditure Panel Survey (MEPS). The Axon Registry is the American Academy of Neurology's neurology-focused qualified clinical data registry that reports and analyzes electronic health record data from participating US neurology providers. Its key function is to support quality improvement within ambulatory neurology practices while also promoting high-quality evidence-based care in clinical neurology. We compared demographics of patients who had an outpatient or office visit with a neurologist along with prevalence of selected neurologic conditions and neurologic procedures across the 3 data sets. METHODS: We performed a cross-sectional, retrospective comparison of 3 data sets: NAMCS (2012-2016), MEPS (2013-2017, 2019), and Axon Registry (2019). We obtained patient demographics (age, birth sex, race, ethnicity), patient neurologic conditions (headache, epilepsy, cerebrovascular disease, multiple sclerosis, parkinsonism, dementia, spinal pain, and polyneuropathy), provider location, and neurologic procedures (neurology visits, MR/CT neuroimaging studies and EEG/EMG neurophysiologic studies). Parameter estimates from the pooled 5-year samples of the 2 public data sets, calculated at the visit level, were compared descriptively with those of the Axon Registry. We calculated Cohen h and performed Wald tests (α = 0.05) to conduct person-level statistical comparisons between MEPS 2019 and Axon Registry 2019 data. RESULTS: The Axon Registry recorded 1.3 M annual neurology visits (NAMCS, 11 M; MEPS, 22 M) and 645 K people with neurologic conditions (MEPS, 10 M). Compared with the pooled national surveys, the Axon Registry has similar patient demographics, neurologic condition prevalence, neuroimaging and neurophysiologic utilization, and provider location. In direct comparison with MEPS 2019, the Axon Registry 2019 had fewer children (2% vs 7%), more elderly persons (21% vs 16%), fewer non-Black and non-White race persons (5% vs 8%), less number of patients with epilepsy (10% vs 13%), more patients with dementia (8% vs 6%), more patients with cerebrovascular disease (11% vs 8%), and a greater predominance of neurology providers in the Midwest (25% vs 20%). The only difference with a non-negligible effect size was the proportion of people younger than 15 years (Cohen h = 0.25). DISCUSSION: The Axon Registry demonstrates high concordance with 2 nationally representative surveys. Recruiting more and diverse neurology providers will further improve the volume, representativeness, and value of the Axon Registry.

Measuring Ambulatory Racial and Ethnic Neurologic Disparities With the Axon Registry.

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.

COVID-19 and Vaccination in the Setting of Neurologic Disease: An Emerging Issue in Neurology.

The COVID-19 pandemic caused by the SARS-CoV-2 virus has left many unanswered questions for patients with neurological disorders and the providers caring for them. Elderly and immunocompromised patients are at increased risk for severe symptoms due to COVID-19, and the virus may increase symptoms of underlying neurological illness, particularly for those with significant bulbar and respiratory weakness or other neurologic disability. Emerging SARS-CoV-2 vaccines offer substantial protection from symptomatic infection, but both patients and providers may have concerns regarding theoretical risks of vaccination, including vaccine safety and efficacy in the context of immunotherapy and the potential for precipitating or exacerbating neurological symptoms. In this statement on behalf of the Quality Committee of the AAN we review the current literature, focusing on COVID-19 infection in adults with neurological disease, in order to elucidate risks and benefits of vaccination in these individuals. Based on existing evidence, neurologists should recommend COVID-19 vaccination to their patients. For those patients being treated with immunotherapies, attention should be paid to timing of vaccination with respect to treatment and the potential for an attenuated immune response.

Quality of Neurologic Care in the United States: Initial Report From the Axon Registry.

OBJECTIVE: To provide the initial description of the quality of outpatient US neurologic care as collected and reported in the Axon Registry. METHODS: We describe characteristics of registry participants and the performance of neurology providers on 20 of the 2019 Axon Registry quality measures. From the distribution of providers' scores on a quality measure, we calculate the median performance for each quality measure. We test for associations between quality measure performance, provider characteristics, and intrinsic measure parameters. RESULTS: There were 948 neurology providers who contributed a total of 6,480 provider-metric observations. Overall, the average quality measure performance score at the provider level was 66 (median 77). At the measure level (n = 20), the average quality measure performance score was 53 (median 55) with a range of 2 to 100 (interquartile range 20-91). Measures with a lower-complexity category (e.g., discrete orders, singular concepts) or developed through the specialty's qualified clinical data registry pathway had higher performance distributions. There was no difference in performance between Merit-Based Incentive Payment System (MIPS) and non-MIPS providers. There was no association between quality measure performance and practice size, measure clinical topic/neurologic condition, or measure year of entry. CONCLUSIONS: This cross-sectional assessment of quality measure performance in 2019 Axon Registry data demonstrates modest performance scores and considerable variability across measures and providers. More complex measures were associated with lower performance. These findings serve as a baseline assessment of quality of ambulatory neurologic care in the United States and provide insights into future measure design.

Axon Registry® data validation: Accuracy assessment of data extraction and measure specification.

OBJECTIVE: To conduct a data validation study encompassing an accuracy assessment of the data extraction process for the Axon Registry®. METHODS: Data elements were abstracted from electronic health records (EHRs) by an external auditor (IQVIA) using virtual site visits at participating sites. IQVIA independently calculated Axon Registry quality measure performance rates based on American Academy of Neurology measure specifications and logic using Axon Registry data. Agreement between Axon Registry and IQVIA data elements and measure performance rates was calculated. Discordance was investigated to elucidate underlying systemic or idiosyncratic reasons for disagreement. RESULTS: Nine sites (n = 720 patients; n = 80 patients per site) with diversity among EHR vendor, practice settings, size, locations, and data transfer method were included. There was variable concordance between the data elements in the Axon Registry and those abstracted independently by IQVIA; high match rates (≥92%) were observed for discrete elements (e.g., demographics); lower match rates (<44%) were observed for elements with free text (e.g., plan of care). Across all measures, there was a 76% patient-level measure performance agreement between Axon Registry and IQVIA (κ = 0.53, p < 0.001). CONCLUSION: There was a range of concordance between data elements and quality measures in the Axon Registry and those independently abstracted and calculated by an independent vendor. Validation of data and processes is important for the Axon Registry as a clinical quality data registry that utilizes automated data extraction methods from the EHR. Implementation of remediation strategies to improve data accuracy will support the ability of the Axon Registry to perform accurate quality reporting.

Introducing the Axon Registry: An opportunity to improve quality of neurologic care.

Clinical quality data registries are increasingly popular tools used by providers to improve the quality of clinical care and satisfy growing numbers of regulatory and reporting requirements. Specialty societies use registries to provide value to their members and guide improvements in care at the population level. In this article, we outline the rationale, structure, function, and challenges related to the American Academy of Neurology's development of its own clinical quality data registry: the Axon Registry.

Practical steps for implementing quality measurement in practice.

All neurologists must begin incorporating quality measurement and quality improvement into their practice. Efforts to pay physicians based on the quality of their care and patient outcomes moves quality measurement beyond reporting to satisfy regulatory requirements and pushes physicians to select and use quality measures to improve patient outcomes and patient experience. This article provides practical steps and proposes considerations for neurologic practices advancing quality measurement and improvement.