Steinbach Robert, Prell Tino, Gaur Nayana, Stubendorff Beatrice, Roediger Annekathrin, Ilse Benjamin, Witte Otto W, Grosskreutz Julian
Hans Berger Department of Neurology, Jena University Hospital, 07747 Jena, Germany.
Center for Healthy Ageing, Jena University Hospital, 07747 Jena, Germany.
J Clin Med. 2020 Sep 5;9(9):2873. doi: 10.3390/jcm9092873.
Amyotrophic lateral sclerosis (ALS) is a progressive neuromuscular disease, the management of which requires the continuous provision of multidisciplinary therapies. Owing to the novel coronavirus disease (COVID-19) pandemic, regular contact with ALS patients at our center was severely restricted and patient care was at risk by delay of supportive therapies. We established a triage system based on the D50 disease progression model and were thus able to identify a prospective cohort with high disease aggressiveness (D50 < 30). Thirty-seven patients with highly aggressive disease were actively offered follow-up, either via telephone or on-site, depending on their disease-specific needs and abilities. We describe here the procedures, obstacles, and results of these prescient efforts during the restrictions caused by COVID-19 in the period between March and June 2020. In conclusion, four patients with highly aggressive disease were initiated with non-invasive ventilation and two received a gastrostomy. We could show that a comparable amount of advanced care was induced in a retrospective cohort within a similar time period one year prior to the COVID-19 outbreak. Our workflow to identify high-risk patients via D50 model metrics can be easily implemented and integrated within existing centers. It helped to maintain a high quality of advanced care planning for our ALS patients.
肌萎缩侧索硬化症（ALS）是一种进行性神经肌肉疾病，其治疗需要持续提供多学科疗法。由于新型冠状病毒病（COVID-19）大流行，我们中心与ALS患者的定期接触受到严重限制，支持性治疗的延迟使患者护理面临风险。我们基于D50疾病进展模型建立了一个分诊系统，从而能够识别出疾病侵袭性高（D50<30）的前瞻性队列。根据37例疾病侵袭性高的患者的疾病特定需求和能力，积极为他们提供电话或现场随访。在此，我们描述了2020年3月至6月COVID-19造成限制期间这些前瞻性努力的程序、障碍和结果。总之，4例疾病侵袭性高的患者开始接受无创通气，2例接受了胃造口术。我们可以证明，在COVID-19疫情爆发前一年的类似时间段内，回顾性队列中诱导了相当数量的高级护理。我们通过D50模型指标识别高危患者的工作流程可以很容易地在现有中心实施和整合。它有助于为我们的ALS患者维持高质量的高级护理计划。
