Impact of the Covid-19 epidemic on a US sample of patients with myasthenia gravis

Gloria Gutierrez; Helen Girma; Pierce Kuhnell; Maurizio Macaluso; Henry J Kaminski

doi:10.1177/26330040221082673

Impact of the Covid-19 epidemic on a US sample of patients with myasthenia gravis

Ther Adv Rare Dis. 2022 Mar 10:3:26330040221082673. doi: 10.1177/26330040221082673. eCollection 2022 Jan-Dec.

Authors

Gloria Gutierrez¹, Helen Girma¹, Pierce Kuhnell², Maurizio Macaluso², Henry J Kaminski³

Affiliations

¹ Department of Neurology, The George Washington University, Washington, DC, USA.
² Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
³ Department of Neurology, The George Washington University, 2150 Pennsylvania Avenue NW, Washington, DC 200037, USA.

Abstract

Introduction: The Covid-19 pandemic has devastated the world and demonstrated the inadequacy of health care in the United States. To assess its impact, the Rare Disease Clinical Research Network conducted a survey to assess the pandemic on the rare disease community of patients, including those with myasthenia gravis (MG).

Methods: A cross-sectional survey was designed to target people or their care givers who live in the United States, have a rare disease, and are under 90 years of age. Respondents logged onto a dedicated web page and completed the survey online, which requested demographic, disease-specific, drug treatment, and symptom information as well as assessment of Covid-19 impact on them. The survey was open from May 2020 to December 2020.

Results: Five hundred ninety-four with self-reported myasthenia gravis completed the survey, which was the largest number of respondents. Sixty percent of respondents were women with a mean age of 60 years. Eighty-nine percent identified as White. Respondents did not appreciate a worsening of symptoms after the pandemic. Only 7 respondents reported the diagnosis of Covid-19 but 11% indicated they had difficulty accessing care at the time of the survey.

Discussion and conclusion: Patients with MG complained of worse access to medical care during the early months of the pandemic, including challenges in diagnosis of suspected Covid-19 infection. A major limitation of the survey is its inability to access minority populations. Nevertheless, the results of the Rare Disease Clinical Research Network (RCDRN) survey of patients with MG provide clear evidence that the pandemic has demonstrated the deficiencies in US healthcare.

Keywords: Covid-19; health care disparities; myasthenia gravis; rare disease; survey.

Plain language summary

Impact of Covid-19 Pandemic on Patients with Myasthenia Gravis Deeper understanding of the consequences of the Covid-19 pandemic on people with rare diseases is critically important in order to enhance health care in the future. The Rare Disease Clinical Research Network (RDCRN) performed a web-based survey of individuals with rare diseases in the first year of the pandemic utilizing questions to assess the impact of the pandemic on their symptoms, access to healthcare, and medication use. Five hundred and ninety-four respondents reported having myasthenia gravis (MG). The average age was 60 years and 60% were women. Nearly ninety percent were White. A large minority indicated difficulty accessing health care and nearly a third used telemedicine. Only seven respondents indicated a diagnosis of Covid-19 but many more had symptoms consistent with infection. Overall, there was no increase in symptoms of MG after the beginning of the pandemic. The pandemic has demonstrated the deficiencies in US healthcare, and these are appreciated in the results of the RCDRN survey of patients with MG. The RDCRN will continue to survey the rare disease community to understand the ongoing impact of the Covid-19 pandemic.