Journal Article

Racial and ethnic disparities in ALS: a longitudinal electronic health records study

Rascati, Karen, Kuo, Tiffany, Park, Chanhyun, Chen, Linda, Godley, Paul, Reynolds, Timothy

2025

Overview

Background: Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease with limited treatment options and significant variability in care. Racial and ethnic disparities in ALS management and outcomes have been reported, but findings remain inconsistent. Objectives: This study aimed to evaluate racial and ethnic disparities in ALS care, specifically differences in healthcare utilization, treatment patterns, and survival, within a large healthcare system. Design: This retrospective cohort study analyzed electronic health records from a large healthcare system in Texas for patients diagnosed with ALS between 2013 and 2023, examining racial and ethnic differences in treatment and outcomes. Methods: Patients were identified using International Classification of Diseases (ICD) codes. Baseline characteristics, including race/ethnicity and socioeconomic factors, were collected. Primary outcomes included the use of noninvasive ventilation (NIV), tracheostomy, gastrostomy, mobility aids, and ALS medications; secondary outcomes included time to diagnosis and survival. Racial and ethnic disparities were assessed using generalized linear regression and Cox proportional hazards models, adjusting for demographic and socioeconomic factors. Results: A total of 636 patients were included (74.5% Non-Hispanic White, 5.3% Non-Hispanic Black, 7.4% Hispanic, and 12.7% Other). Non-Hispanic Black patients had significantly higher tracheostomy rates than Non-Hispanic White patients (35.3% vs 8.7%; adjusted odds ratio (OR), 6.20; 95% confidence interval (CI), 2.43–15.84). Hispanic patients had lower odds of receiving riluzole (42.6% vs 61.8%; adjusted OR, 0.36; 95% CI, 0.18–0.71) and higher rates of emergency department visits (adjusted OR, 2.00; 95% CI, 1.09–3.65) and hospitalizations (adjusted OR, 2.57; 95% CI, 1.37–4.81). No significant racial or ethnic differences were observed in time to diagnosis or survival after adjustment. Conclusion: Significant racial and ethnic disparities exist in ALS care, particularly in tracheostomy utilization, medication prescribing, and healthcare access. These findings underscore the need for targeted interventions to promote equitable ALS management, including provider education and improved healthcare accessibility. Plain language summary Understanding racial and ethnic differences in ALS care and survival using electronic health records Why was the study done? Amyotrophic lateral sclerosis (ALS) is a progressive and fatal neurodegenerative disease with no cure. While treatments can help manage symptoms, access to ALS care and treatment may vary by race and ethnicity. Previous studies have reported racial and ethnic disparities in ALS management, but findings have been inconsistent. Understanding these differences is essential for ensuring equitable healthcare access and improving patient outcomes. What did the researchers do? The research team analyzed electronic health records from a large healthcare system in Texas to examine racial and ethnic differences in ALS care. They studied 636 patients diagnosed with ALS between 2013 and 2023, assessing healthcare utilization, treatment patterns, and survival. Statistical models were used to account for demographic and socioeconomic differences. What did the researchers find? Non-Hispanic Black patients were more likely than Non-Hispanic White patients to undergo tracheostomy (35.3% vs 8.7%). Hispanic patients were less likely to receive riluzole, a medication that may slow ALS progression (42.6% vs 61.8%). Hispanic patients also had more emergency room visits and hospitalizations. However, there were no significant racial or ethnic differences in time to ALS diagnosis or overall survival after adjusting for socioeconomic factors. What do the findings mean? The study highlights disparities in ALS care, particularly in access to key treatments and healthcare services. Addressing these gaps requires targeted efforts, such as improving healthcare access, reducing barriers to receiving medications, and educating providers on disparities to ensure equitable ALS care for all patients.

• Publisher: SAGE Publications,SAGE PUBLICATIONS, INC,SAGE Publishing
• Subject: Amyotrophic lateral sclerosis / Cultural differences / Demography / Diagnosis / Electronic health records / Electronic medical records / Emergency medical care / Ethnicity / Health care / Health care access / Health services utilization / Minority & ethnic groups / Neurodegenerative diseases / Original Research / Ostomy / Patients / Race / Racial differences / Regression analysis / Socioeconomic factors / Statistical models / Survival / Tracheostomy / Tracheotomy