Shanshan Chen, Demetrius Carter, Paula Burke Brockenbrough, Stephen Cox, Kelly Gwathmey
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引用次数: 0
Abstract
Objective: 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.
Methods: 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.
Results: 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, p < 0.001) and FVC (17.9 percentage points p < 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).
Discussion: 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.
目的:肌萎缩侧索硬化症(ALS)患者的预后可以通过及时诊断、尽早开始疾病改良治疗以及参与多学科临床来改善。我们研究了黑人和非西班牙裔高加索ALS患者在临床表现时的诊断延迟和疾病严重程度。方法:我们对2017年至2023年间在弗吉尼亚联邦大学卫生系统多学科ALS诊所就诊的非西班牙裔高加索和黑人ALS患者进行了回顾性分析。收集基线预约时的诊断延迟、ALS功能评定量表修订版(ALSFRS-R)和直立强迫肺活量(FVC)评分。评估患者与诊所的距离和居住区的富裕程度。结果:我们分析了172名非西班牙裔高加索人和33名黑人ALS患者。与非西班牙裔白人患者相比,黑人患者的诊断延迟增加了64%。黑人患者在ALSFRS-R上的表现较低(5.3分,p p 讨论:我们的研究结果表明,黑人ALS患者在ALS诊断延迟、疾病严重程度更高和呼吸功能更低方面存在很大的种族差异。诊断延迟延长了获得疾病改良疗法、多学科护理、耐用医疗设备以及呼吸和营养支持的机会。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。