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Racial and ethnic disparities in ALS: a longitudinal electronic health records study
Tiffany Kuo1, Timothy Reynolds2, Linda Chen2
1Baylor Scott & White Health, The University of Texas at Austin, Pharmacy Building, 2409 University Ave, Austin, TX 78712, USA.
Therapeutic Advances in Neurological Disorders
|September 4, 2025
Summary
Racial and ethnic disparities in amyotrophic lateral sclerosis (ALS) care are evident, with differences in treatment and healthcare access observed among diverse patient groups. Targeted interventions are needed to ensure equitable management for all ALS patients.
Area of Science:
- Neurology
- Health Services Research
- Health Equity
Background:
- Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease with complex care needs and documented, yet inconsistent, racial and ethnic disparities.
- Understanding these disparities is crucial for improving patient outcomes and ensuring equitable healthcare delivery.
Purpose of the Study:
- To investigate racial and ethnic disparities in healthcare utilization, treatment patterns, and survival among patients with ALS.
- To identify specific differences in care received by different racial and ethnic groups within a large healthcare system.
Main Methods:
- Retrospective cohort study of 636 ALS patients diagnosed between 2013-2023 using electronic health records.
- Analysis of healthcare utilization (NIV, tracheostomy, gastrostomy, aids, medications) and survival, with statistical adjustments for demographic and socioeconomic factors.
Main Results:
- Non-Hispanic Black patients showed significantly higher tracheostomy rates compared to Non-Hispanic White patients.
- Hispanic patients had lower odds of receiving riluzole and experienced higher rates of emergency department visits and hospitalizations.
- No significant racial or ethnic differences were found in time to diagnosis or adjusted survival.
Conclusions:
- Significant racial and ethnic disparities persist in ALS care, affecting treatment choices and healthcare access.
- These findings highlight the need for targeted interventions, including provider education and enhanced accessibility, to achieve equitable ALS management.
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