COVID-19 and myositis – unique challenges for patients

Abstract

Objective The COVID-19 pandemic and the subsequent effects on healthcare systems is having a significant effect on the management of long-term autoimmune conditions. The aim of this study was to assess the problems faced by patients with idiopathic inflammatory myopathies (IIM). Methods An anonymized eSurvey was carried out with a focus on effects on disease control, continuity of medical care, drug procurance and prevalent fears in the patient population. Results Of the 608 participants (81.1% female, median (s.d.) age 57 (13.9) years), dermatomyositis was the most frequent subtype (247, 40.6%). Patients reported health-related problems attributable to the COVID-19 pandemic (n = 195, 32.1%); specifically 102 (52.3%) required increase in medicines, and 35 (18%) required hospitalization for disease-related complications. Over half (52.7%) of the surveyed patients were receiving glucocorticoids and/or had underlying cardiovascular risk factors (53.8%), placing them at higher risk for severe COVID-19. Almost one in four patients faced hurdles in procuring medicines. Physiotherapy, critical in the management of IIM, was disrupted in 214 (35.2%). One quarter (159, 26.1%) experienced difficulty in contacting their specialist, and 30 (4.9%) were unable to do so. Most (69.6%) were supportive of the increased use of remote consultations to maintain continuity of medical care during the pandemic. Conclusion This large descriptive study suggests that the COVID-19 pandemic has incurred a detrimental effect on continuity of medical care for many patients with IIM. There is concern that delays and omissions in clinical care may potentially translate to poorer outcomes in the future.

Understanding and managing anti-MDA 5 dermatomyositis, including potential COVID-19 mimicry

“…A recent report identified antibodies against immunogenic epitopes with high sequence identity to severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) in patients of DM, suggesting a role of latent viral infection and molecular mimicry in the pathogenesis of DM [28]. Recent reports of a high flare and admission rate among patients with myositis during the pandemic create the case to explore this speculative hypothesis [29][30][31].…”

Social Media for Scholarly Communication in Central Asia and Its Neighbouring Countries

“… 80 85 During the COVID-19 pandemic, SMPs have assumed a larger role in providing access to the patient population, and understanding about their concerns and preferences. 86 87 88 SMPs are also being advocated by the professional societies to improve clinical practice and a global connectivity to allow the best available care to be given to any patient. 88 …”

Reporting Survey Based Studies – a Primer for Authors

“… 3 These are also one of the most convenient methods of obtaining data about rare diseases. 4 With major technological advancements and improved global interconnectivity, especially during the coronavirus disease 2019 (COVID-19) pandemic, surveys have surpassed other means of research due to their distinctive advantage of a wider reach, including respondents from various parts of the world having diverse cultures and geographically disparate locations. Moreover, survey-based research allows flexibility to the investigator and respondent alike.…”