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 Vol. 25; no. 1-2; p. 112
• Main Authors: Chen, Shanshan, Carter, Demetrius, Brockenbrough, Paula Burke, Cox, Stephen, Gwathmey, Kelly
• Format: Journal Article
• Language: English
• Published: England 01.02.2024
• Subjects: Amyotrophic Lateral Sclerosis - diagnosis; Delayed Diagnosis; Humans; Retrospective Studies; Vital Capacity; racial disparities; ALS; structural racism; diagnostic delay; implicit bias
• ISSN: 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,  < 0.001) and FVC (17.9 percentage points  < 0.001) at time of first clinic visit. Black patients lived closer to clinic, with higher proportion living in the city of Richmond, but in less affluent areas with lower median house income ($55,300 ± 22,600 vs $69,900 ± 23,700). Our findings demonstrate a large racial difference in ALS diagnostic delay, and greater disease severity and lower respiratory function at time of diagnosis for Black ALS patients. Delay in diagnosis prolongs access to disease-modifying therapies, multidisciplinary care, durable medical equipment, and respiratory and nutritional support. Potential sources of these racial disparities include providers' implicit bias and structural racism.