Knowledge and perceptions of the COVID-19 pandemic among patients with myasthenia gravis: follow up survey

Yingkai Li, Y. Harada, Marjan Cobbaert, V. Juel, L. Hobson‐Webb, S. Raja, N. González, J. Guptill
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Abstract

Introduction  We previously conducted a survey study in April 2020 at the beginning of the SARS-CoV-2 (COVID-19) pandemic to understand how it affected patients with myasthenia gravis (MG). Since then, significant advances have occurred in the following areas: knowledge about the SARS-CoV-2 virus, infection risk mitigation, patient management, risks for MG patients, and a global vaccination program. We conducted a follow-up survey in February 2021 to assess how these advances impacted the care and perception of MG patients.     Methods  We conducted a prospective online survey study of MG patients at a large academic practice in the Duke Health System.   Results  Seventy-eight patients participated in the survey including 55 from previous survey and 23 newly identified patients. The top reported change in the interaction with healthcare providers was an increase in telemedicine visits (74%). The median satisfaction score (0-100 scale) for telemedicine visits was 74. Ninety-six percent of survey participants expressed concern about pandemic and nearly half of participants showed anxiety based on Generalized Anxiety Disorder-7 score. The top 3 concerns related to COVID-19 were getting hospitalized (62%), exacerbation (62%) and death (53%).  Discussion   Although the results of follow-up survey were overall similar to the previous study, most of patients switched from in-person clinic visits to telemedicines. The overwhelmingly large portion of patients continue to have concern and anxiety for pandemic but the patients with severe symptoms have higher anxiety scores. Conclusion   This follow-up survey demonstrated the adjustment of MG patients to new methods of communication, significant psychological impact of COVID-19 on them and their good healthcare literacy.  
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重症肌无力患者对COVID-19大流行知识和认知的随访调查
我们之前在2020年4月SARS-CoV-2 (COVID-19)大流行开始时进行了一项调查研究,以了解它如何影响重症肌无力(MG)患者。从那时起,在以下领域取得了重大进展:关于SARS-CoV-2病毒的知识、感染风险缓解、患者管理、MG患者的风险以及全球疫苗接种计划。我们在2021年2月进行了一项随访调查,以评估这些进展如何影响MG患者的护理和认知。方法我们在杜克健康系统的一个大型学术实践中对MG患者进行了一项前瞻性在线调查研究。结果共有78例患者参加调查,其中既往调查55例,新确诊患者23例。据报道,与医疗保健提供者互动的最大变化是远程医疗就诊的增加(74%)。远程医疗就诊满意度中位数(0-100分)为74分。96%的调查参与者表达了对流行病的担忧,近一半的参与者根据广泛性焦虑障碍-7评分表现出焦虑。与COVID-19相关的前三大担忧是住院(62%)、病情恶化(62%)和死亡(53%)。虽然随访调查的结果总体上与之前的研究相似,但大多数患者从亲自就诊转向远程医疗。绝大多数患者仍然对大流行感到担忧和焦虑,但症状严重的患者的焦虑评分较高。结论本次随访调查显示,MG患者适应新的沟通方式,新冠肺炎对他们的心理影响显著,健康素养良好。
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