Knowledge and perceptions of the<scp>COVID</scp>‐19 pandemic among patients with myasthenia gravis

Li, Yingkai; Emmett, C Douglas; Cobbaert, Marjan; Sanders, Donald B.; Juel, Vern C.; Hobson‐Webb, Lisa D.; Massey, Janice M.; Gable, Karissa; Raja, Shruti; González, Natalia; Guptill, Jeffrey T.

doi:10.1002/mus.27130

Cited by 14 publications

(24 citation statements)

References 28 publications

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“…Our data suggest that IST is not per se associated with a higher risk of SARS-CoV-2 infection. This might be due to MG patients with IST being more concerned about COVID-19 than MG patients without IST leading to better compliance with hygiene recommendations in Germany during the study period (e.g., lockdowns, social distancing rules) [ 26 , 31 ].…”

Section: Discussionmentioning

confidence: 99%

Risk and course of COVID-19 in immunosuppressed patients with myasthenia gravis

et al. 2022

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Background Patients with myasthenia gravis (MG) are potentially prone for a severe COVID-19 course, but there are limited real-world data available on the risk associated with COVID-19 for patients with MG. Here, we investigate whether current immunosuppressive therapy (IST) influences the risk of SARS-CoV-2 infection and COVID-19 severity. Methods Data from the German myasthenia gravis registry were analyzed from May 2020 until June 2021 and included patient demographics, MG disease duration, comorbidities, current IST use, COVID-19 characteristics, and outcomes. Propensity score matching was employed to match MG patients with IST to those without, and multivariable binary logistic regression models were used to determine associations between IST with (1) symptomatic SARS-CoV-2 infection and (2) severe COVID-19 course, as measured by hospitalization or death. Results Of 1379 patients with MG, 95 (7%) patients (mean age 58 (standard deviation [SD] 18) presented with COVID-19, of which 76 (80%) received IST at time of infection. 32 patients (34%) were hospitalized due to COVID-19; a total of 11 patients (12%) died. IST was a risk factor for hospitalization or death in the group of COVID-19-affected MG patients (odds ratio [OR] 3.04, 95% confidence interval [CI] = 1.02–9.06, p = 0.046), but current IST was not associated with a higher risk for SARS-CoV-2 infection itself. Discussion In this national MG cohort study, current IST use was a risk factor for a severe disease course of COVID-19 but not for SARS-CoV-2 infection itself. These data support the consequent implementation of effective strategies to prevent COVID-19 in this high-risk group. Trial registration information German clinical trial registry (https://www.drks.de), DRKS00024099, first patient enrolled: February 4th, 2019.

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Section: Discussionmentioning

confidence: 99%

Risk and course of COVID-19 in immunosuppressed patients with myasthenia gravis

et al. 2022

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“…Furthermore, an Italian study showed that physical activity in patients with NMD, was significantly reduced during lockdown [ 17 ] which may have negative health consequences as physical activity and exercises are recommended to reduce progression of muscle weakness [ 18 ]. There are also indications of negative emotional consequences of the pandemic and the associated restrictions from studies of the general public [ 19 ] and a few studies in patients with NMD, primarily ALS, such as concerns about COVID-19 infection, loneliness, anxiety and depression [ 12 , 20 – 22 ].…”

Section: Introductionmentioning

confidence: 99%

Impact of the COVID-19 pandemic on biopsychosocial health and quality of life among Danish children and adults with neuromuscular diseases (NMD)—Patient reported outcomes from a national survey

Handberg

Werlauff²,

Højberg³

et al. 2021

PLoS ONE

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The purpose was to investigate the impact of the COVID-19 pandemic on biopsychosocial health, daily activities, and quality of life among children and adults with neuromuscular diseases, and to assess the prevalence of COVID-19 infection and the impact of this in patients with neuromuscular diseases. The study was a national questionnaire survey. Responses were obtained from 811 adults (29%) and 67 parents of children (27%) with neuromuscular diseases. Many patients reported decreased health or physical functioning, and changes in access to physiotherapy or healthcare due to the pandemic. Participants generally perceived themselves or their child to be at high risk of severe illness from COVID-19, but only 15 patients had suffered from COVID-19 and experienced mild flu-like symptoms. 25.3% of adults and 46.6% of parents experienced anxiety. 20.4% of adults and 27.6% of parents experienced symptoms of depression. In general, the pandemic contributed to anxiety, a depressed mood as well as to fewer leisure activities, less social contact, isolation from work/school and a reduced quality of life, in particular for patients who perceived themselves to be at high risk of severe illness. The results demonstrate that the pandemic has had a negative impact on biopsychosocial health and quality of life of patients with neuromuscular diseases.

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“…Our findings indicate that healthcare services should build on the experience gained during the early waves of the pandemic to meet the needs expressed by the neurological patient community [ 11 , 12 , 13 ]. In particular, video appointments and regular phone calls could be added to face‐to‐face consultations to increase contacts with healthcare teams while minimizing virus exposure [ 14 ].…”

Section: Discussionmentioning

confidence: 99%

Lessons learned from people with neurological diseases at the time of COVID‐19: The EFNA‐EAN survey

Bodini

Moro

Jaarsma³

et al. 2021

Euro J of Neurology

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Background and purpose:The European Federation of Neurological Associations (EFNA), in partnership with the NeuroCOVID-19 taskforce of the European Academy of Neurology (EAN), has investigated the impact of the first wave of the COVID-19 pandemic on individuals with neurological diseases, as well as the hopes and fears of these patients about the post-pandemic phase.Methods: An EFNA-EAN survey was available online to any person living with a neurological disorder in Europe. It consisted of 18 items concerning the impact of the first wave of the COVID-19 pandemic on the medical care of people with neurological disorders, and the hopes and fears of these individuals regarding the post-pandemic phase.Results: For 44.4% of the 443 survey participants, the overall care of their neurological disease during the pandemic was inappropriate. This perception was mainly due to significant delays in accessing medical care (25.7%), insufficiently reliable information received about the potential impact of COVID-19 on their neurological disease (49.6%), and a substantial lack of involvement in their disease management decisions (54.3%). Participants indicated that their major concerns for the post-pandemic phase were experiencing longer waiting times to see a specialist (24.1%), suffering from social isolation and deteriorating mental well-being (23.1%), and facing delays in clinical trials with disinvestment in neuroscience research (13.1%).Conclusions: Despite the great efforts of health services to cope with the first wave of the COVID-19 pandemic, individuals with neurological conditions feel they have been left behind. These findings provide invaluable insights for improving the care of patients with neurological disorders in the further course of the COVID-19 pandemic.

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Knowledge and perceptions of theCOVID‐19 pandemic among patients with myasthenia gravis

Cited by 14 publications

References 28 publications

Risk and course of COVID-19 in immunosuppressed patients with myasthenia gravis

Risk and course of COVID-19 in immunosuppressed patients with myasthenia gravis

Impact of the COVID-19 pandemic on biopsychosocial health and quality of life among Danish children and adults with neuromuscular diseases (NMD)—Patient reported outcomes from a national survey

Lessons learned from people with neurological diseases at the time of COVID‐19: The EFNA‐EAN survey

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