Department of Neurology, Toho University Faculty of Medicine, Japan.
Department of Rehabilitation Medicine, Toho University Graduate School of Medicine, Japan.
Intern Med. 2021;60(10):1519-1524. doi: 10.2169/internalmedicine.6810-20. Epub 2021 May 15.
Objective The coronavirus disease 2019 (COVID-19) pandemic has resulted in a shortage of medical resources, including ventilators, personal protective equipment, medical staff, and hospital beds. We investigated the impact of COVID-19 in amyotrophic lateral sclerosis (ALS) patients, their families, caregivers, and medical experts. Methods We conducted a nationwide ALS webinar about COVID-19 in May 2020 and sent a questionnaire to those enrolled. Results A total of 135 participants (31 ALS patients; 23 families and caregivers of ALS patients; 81 medical experts) responded to this cross-sectional self-report questionnaire. The results showed that tracheostomy and invasive ventilation (TIV) was used in 22.6% of ALS patients, whereas 77.4% of ALS patients were not under TIV. Among non-TIV patients (n=24), 79.2% did not want TIV in the future. However, 47.4% of non-TIV patients not wanting a tracheostomy in advanced stages replied that they would want an emergency tracheostomy if they developed COVID-19-related pneumonia. These results suggest that ALS patients may be receptive to emergency treatments for reasons other than ALS. In addition, approximately half of the ALS patients agreed with the policy of not ventilating the elderly or ALS patients in case of a ventilator shortage. Furthermore, compared with medical experts, few ALS patients reported that the chance for ALS patients to obtain work was higher due to the increasing availability of remote work. Conclusions This survey indicates that the COVID-19 pandemic might be associated with increased distress about access to care and work, inducing contradictory responses and potential hopelessness among ALS patients.
2019 年冠状病毒病（COVID-19）大流行导致医疗资源短缺，包括呼吸机、个人防护设备、医务人员和病床。我们调查了 COVID-19 对肌萎缩侧索硬化症（ALS）患者、他们的家人、照顾者和医学专家的影响。
我们在 2020 年 5 月举办了一次关于 COVID-19 的全国性 ALS 网络研讨会，并向与会者发送了一份问卷。
共有 135 名参与者（31 名 ALS 患者；23 名 ALS 患者的家属和照顾者；81 名医学专家）对这份横断面自我报告问卷做出了回应。结果表明，22.6%的 ALS 患者接受了气管切开术和有创通气（TIV），而 77.4%的 ALS 患者未接受 TIV。在未接受 TIV 的患者（n=24）中，79.2%的人表示将来不想接受 TIV。然而，47.4%的不希望在晚期进行气管切开术的非 TIV 患者表示，如果他们患上与 COVID-19 相关的肺炎，他们会希望进行紧急气管切开术。这些结果表明，ALS 患者可能会因为其他原因而接受紧急治疗，而不仅仅是因为 ALS。此外，大约一半的 ALS 患者同意在呼吸机短缺的情况下，不对老年人或 ALS 患者进行通气的政策。此外，与医学专家相比，由于远程工作的可用性增加，很少有 ALS 患者报告说 ALS 患者获得工作的机会更高。
这项调查表明，COVID-19 大流行可能与获得护理和工作的机会增加有关，导致 ALS 患者产生矛盾的反应和潜在的绝望。
