Racial disparities in ALS diagnostic delay: a single center's experience and review of potential contributing factors

• Published in: Amyotrophic lateral sclerosis and frontotemporal degeneration 2024-02, Vol.25 (1-2), p.112-118
• Main Authors: Chen, Shanshan, Carter, Demetrius, Brockenbrough, Paula Burke, Cox, Stephen, Gwathmey, Kelly
• Format: Article
• Language: English
• ISSN: 2167-8421; 2167-9223
• DOI: 10.1080/21678421.2023.2273361

Outcomes for amyotrophic lateral sclerosis (ALS) patients are improved with prompt diagnosis, earlier initiation of disease-modifying treatments, and participation in a multidisciplinary clinic. We studied diagnostic delay and disease severity at time of clinic presentation between Black and non-Hispanic Caucasian ALS patients. We performed a retrospective analysis of non-Hispanic Caucasian and Black ALS patients seen in the Virginia Commonwealth University Health System multidisciplinary ALS clinic between 2017 and 2023. Diagnostic delay, ALS Functional Rating Scale-Revised (ALSFRS-R) and upright forced vital capacity (FVC) scores at baseline appointment were collected. Patient's distance from clinic and affluency of residential neighborhood were evaluated. We analyzed 172 non-Hispanic Caucasian and 33 Black ALS patients. Black patients had a 64% increase in diagnostic delay compared to non-Hispanic Caucasian patients. Black patients had a lower performance on ALSFRS-R (5.3 points,