Survival and multidisciplinary amyotrophic lateral sclerosis clinic care at a United States Veterans Affairs medical center

Stephen Rostad, Linder Wendt, Mia Poleksic, Bryan Hutchinson-Reuss, Heather Bingham, D. Fattal
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Abstract

Introduction/Aims: The purpose of this work was to investigate survival outcomes in patients with amyotrophic lateral sclerosis (ALS) at our Veteran’s Affairs Medical Center multidisciplinary ALS clinic and compare this to relevant data from several European studies. Methods: Our sample consisted of 56 total Veterans (n=56; 54 males, 2 females) that had been seen between June 24, 2013 and February 1, 2021 at our multidisciplinary ALS clinic. Results: The median survival time of our Veterans from symptom onset was 40.96 months (95% CI of 32.17, 76.07), and the median survival time from diagnosis was 23.77 months (95% CI of 18.64, 38.58). This was consistent with the literature. Further consistent with the literature is that multidisciplinary clinics, including ours, have survival advantage over general neurology clinics. Analyzing factors that contributed to this survival, we found significant protective effect on survival from Edaravone use (HR = 0.32, p = 0.036). Otherwise, there was no significant effect on survival noted from use of percutaneous endoscopic gastrostomy (PEG), non-invasive ventilation (NIV), or Riluzole. Conclusion: We found no significant difference in survival rates between our U.S. Veterans in our multidisciplinary ALS clinic and European multidisciplinary ALS clinics, and both are better than general neurology clinics. We also found that Edaravone use may provide some benefit to survival in this patient population.
美国退伍军人事务医疗中心的存活率和多学科肌萎缩侧索硬化症门诊护理
导言/目的:这项研究的目的是调查退伍军人事务医疗中心 ALS 多学科门诊中肌萎缩侧索硬化症(ALS)患者的生存结果,并将其与几项欧洲研究的相关数据进行比较。研究方法我们的样本包括 2013 年 6 月 24 日至 2021 年 2 月 1 日期间在多学科 ALS 诊所就诊的 56 名退伍军人(n=56;54 名男性,2 名女性)。结果退伍军人从症状出现起的中位生存时间为 40.96 个月(95% CI 为 32.17 到 76.07),从确诊起的中位生存时间为 23.77 个月(95% CI 为 18.64 到 38.58)。这与文献报道一致。与文献报道进一步一致的是,多学科诊所(包括我们的诊所)比普通神经病学诊所更具生存优势。在分析导致存活率提高的因素时,我们发现使用依达拉奉对存活率有显著的保护作用(HR = 0.32,P = 0.036)。除此之外,使用经皮内镜胃造瘘术(PEG)、无创通气(NIV)或利鲁唑对存活率没有明显影响。结论我们发现美国退伍军人在我们的多学科 ALS 诊所和欧洲多学科 ALS 诊所的存活率没有明显差异,都优于普通神经病学诊所。我们还发现,使用依达拉奉可能会对这类患者的存活率有所帮助。
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