First detected in 2019, COVID-19 caused by the SARS-CoV-2 virus continues to impact the world.(1) COVID-19 has been shown to have greater health consequences on patients with chronic health conditions, including more severe disease, higher rates of hospitalisation and increased mortality.(2) Patients with chronic diseases have also been more negatively affected in the pandemic psychosocially.(3,4) During the first year of the pandemic in Australia, there has been higher reported levels of psychological distress.(5)

The aim of this project is to explore the various impacts of the COVID-19 pandemic on Australian patients with Myasthenia Gravis, with a focus on myasthenia management (timing and choice of immunosuppression, timing of vaccinations and access to care), quality of life and mental health.


We hypothesise that the Covid-19 pandemic has had a negative impact on myasthenia management and quality of life of our patients. The survey is exclusively available through Myasthenia Alliance Australia (MAA) and invites all patients with myasthenia gravis in Australia to participate. The survey should take no more than 15 minutes of your valuable time. The survey is anonymous. The information will be collected via REDCAp and stored in a password-protected Excel document. We will provide a short summary of the results to MAA once it has been collated, and aim to publish the findings in a medical journal. The investigators for this project are: Dr. Katherine Buzzard, Dr. Pakeeran Siriratnam, Dr. WenWen Zhang, Dr. Stephen Reddel and Dr. Zhiben Chen. Ethical clearance is obtained from Alfred Health (single site low risk ethics form).

The results of this survey will provide clinicians and the public with an increased understanding of how the covid-19 pandemic has impacted patients with myasthenia gravis. The findings are not only important as we continue to live with the pandemic in its various stages but may also provide useful information for planning and managing future pandemics.

PLEASE ONLY COMPLETE THE SURVEY ONCE.

For clinicians:
The clinician's survey should take under 10 minutes. Your unique position as treating clinicians of MG patients during the pandemic will provide great insights into the challenges both you and your patients have faced. The focus is on the impact of your management of myasthenia (timing and choice of immunosuppression, timing of vaccinations and access to care), and the mental health impact on your patients. You will only be asked to do the survey once.
The link to the survey is available on the MAA website: https://myastheniaalliance.org.au/

If there are any questions, please address to Dr. Pakeeran Siriratnam via email p.siriratnam@alfred.org.au.


Contact details for complaints: Complaints Officer, Office of Ethics & Research Governance, Alfred Health, email research@alfred.org.au, phone 03 90763619

References:
1. Liu YC, Kuo RL, Shih SR. COVID-19: The first documented coronavirus pandemic in history. Biomed J 2020;43(4):328-333.
2. Geng JS, Yu XL, Bao HN, et al. Chronic Diseases as a Predictor for Severity and Mortality of COVID-19: A Systematic Review With Cumulative Meta-Analysis. Front. Med. 2021.
3. Singh K, Kaushik A, Johnson L, et al. Patient experiences and perceptions of chronic disease care during the COVID-19 pandemic in India: a qualitative study. BMJ 11;6:1-10.
4. Coupet S, Nicolas G, Louder C. When public health messages become stressful: Managing chronic disease during COVID-19. Social Sciences & Humanities Open 2021;4(1).
5. Australian Government. The first year of COVID-19 in Australia: direct and indirect health effects. Australian Institute of Health and Welfare 2021:73-75

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