Neuromuscular Division, Department of Neurology, Duke University Medical Center, Durham, North Carolina, USA.
Duke Clinical Research Institute, Durham, North Carolina, USA.
Muscle Nerve. 2021 Mar;63(3):357-364. doi: 10.1002/mus.27130. Epub 2020 Dec 20.
Patients with myasthenia gravis (MG) may be particularly vulnerable during the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pandemic due to risk of worsening disease during infection, potential adverse impacts of coronavirus disease 2019 (COVID-19) treatments on neuromuscular transmission, and a limited ability to fight off infection related to immunosuppressive treatments. Our goal is to understand how patients are experiencing the COVID-19 pandemic, including where they receive relevant information, how it has affected medical care, and what measures they use to protect themselves.
This is a prospective online survey study at large academic practice. All patients with a neuromuscular junction disorder diagnosis code in the Duke Health System were invited to participate.
One thousand eight hundred and forty eight patients were approached to participate and 75 completed the survey between 16 April 2020 and 28 May 2020. The most frequently used information sources were non-presidential federal government (75%), state government (57%), local healthcare provider (37%), and television news (36%). Non-presidential federal government (80%), local healthcare providers (55%), state government (33%), and patient support organizations (29%) were considered the most trusted information sources. Thirty-three (44%) of survey responders had attended a telemedicine visit. Patients were taking recommended precautions during the pandemic and remained very concerned (69%) about COVID-19. Generalized Anxiety Disorder-7 scores were moderate-severe in 20% of responders.
Healthcare providers, the government, and patient organizations play a critical role in communicating with the MG patient community. Use of targeted messaging strategies by these groups to convey accurate information may increase effectiveness and lead to more informed patients with reduced anxiety.
由于在感染期间疾病恶化的风险、新冠病毒 2019 病（COVID-19）治疗对神经肌肉传递的潜在不利影响以及与免疫抑制治疗相关的抗感染能力有限，重症肌无力（MG）患者在严重急性呼吸综合征冠状病毒 2（SARS-CoV-2）大流行期间可能特别脆弱。我们的目标是了解患者在 COVID-19 大流行期间的体验，包括他们在哪里获得相关信息、它如何影响医疗保健以及他们采取什么措施来保护自己。
这是在大型学术实践中进行的前瞻性在线调查研究。邀请了在杜克健康系统中具有神经肌肉接头疾病诊断代码的所有患者参加。
有 1848 名患者被邀请参加，在 2020 年 4 月 16 日至 2020 年 5 月 28 日期间，有 75 名患者完成了调查。最常使用的信息来源是非总统联邦政府（75%）、州政府（57%）、当地医疗保健提供者（37%）和电视新闻（36%）。非总统联邦政府（80%）、当地医疗保健提供者（55%）、州政府（33%）和患者支持组织（29%）被认为是最值得信赖的信息来源。33 名（44%）调查受访者曾参加过远程医疗就诊。在大流行期间，患者采取了建议的预防措施，并仍然非常关注 COVID-19（69%）。20%的受访者的广泛性焦虑症-7 评分处于中度至重度。
医疗保健提供者、政府和患者组织在与 MG 患者群体沟通方面发挥着至关重要的作用。这些团体使用有针对性的信息传递策略来传达准确的信息，可能会提高效率，并使更多知情的患者减少焦虑。
