Knowledge and perceptions of the COVID-19 pandemic among patients with myasthenia gravis: follow up survey
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2020
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<jats:p>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. </jats:p>
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Scholars@Duke
Yingkai Li
Vern Charles Juel
Lisa Deneen Hobson-Webb
Trained in neuromuscular medicine, my clinical career has focused on the care of patients with genetically mediated neuromuscular disorders, rare peripheral neuropathies, and immune-mediated nerve and muscle disorders and performing high quality electrodiagnostic testing (nerve conduction studies/electromyography). As a researcher, the core aim of my work is applying high resolution ultrasound in the care of patients with neuromuscular diseases. My early work focused on peripheral nerve and is now moving toward muscle imaging. My current research includes muscle ultrasound in late onset Pompe disease and peripheral nerve imaging in acute inflammatory demyelinating radiculoneuropathy. Since 2016, I have collaborated with Dr. Kathryn Nightingale’s biomedical engineering laboratory on applying shear wave imaging to diseases of the nerve and muscle. I am interested in clinical trials for neuromuscular disorders and novel technologies for diagnosing and monitoring neuromuscular disease.
Shruti Mukund Raja
Natalia Laura Gonzalez
American Board of Psychiatry and Neurology
Neurology (#61445), 09/24/2018
American Board of Electrodiagnostic Medicine
Electrodiagnostic Medicine (#4137), 2020
Neuromuscular Ultrasound Certificate of Added Qualification (#84), 2023
American Board of Psychiatry and Neurology
Neuromuscular Disorders (# 914), 10/19/2020
UCB Pharmaceuticals/Duke/UNC Neurology Clinical Drug 07/2019 - 09/2021
Raleigh, NC/Durham, NC Development Fellowship
Jeffrey Guptill
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