Department of Biostatistics, Virginia Commonwealth University, Richmond, VA, USA.
Department of Neurology, Virginia Commonwealth University, Richmond, VA, USA.
Amyotroph Lateral Scler Frontotemporal Degener. 2024 Feb;25(1-2):112-118. doi: 10.1080/21678421.2023.2273361. Epub 2024 Jan 23.
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.
肌萎缩侧索硬化症（ALS）患者的预后可通过及时诊断、尽早开始疾病修饰治疗以及参与多学科诊所来改善。我们研究了黑人和非西班牙裔白种人 ALS 患者在进入多学科 ALS 诊所时的诊断延迟和疾病严重程度。
我们对 2017 年至 2023 年间在弗吉尼亚联邦大学健康系统多学科 ALS 诊所就诊的非西班牙裔白人和黑人 ALS 患者进行了回顾性分析。收集了诊断延迟、基线就诊时的肌萎缩侧索硬化功能评定量表修订版（ALSFRS-R）和直立用力肺活量（FVC）评分。评估了患者与诊所的距离和居住社区的富裕程度。
我们分析了 172 名非西班牙裔白人和 33 名黑人 ALS 患者。黑人患者的诊断延迟时间比非西班牙裔白种人患者增加了 64%。黑人患者在首次就诊时的 ALSFRS-R 评分（低 5.3 分，<0.001）和 FVC（低 17.9 个百分点，<0.001）方面表现较差。黑人患者离诊所更近，居住在里士满市的比例更高，但居住在收入中位数较低（55300±22600 美元与 69900±23700 美元）的较贫困地区。
我们的研究结果表明，黑人 ALS 患者在 ALS 诊断延迟方面存在较大的种族差异，并且在诊断时疾病严重程度更高，呼吸系统功能更差。诊断延迟会延长获得疾病修饰治疗、多学科护理、耐用医疗设备以及呼吸和营养支持的时间。这些种族差异的潜在来源包括提供者的隐性偏见和结构性种族主义。
