People may recall completing a survey way back in mid-2022 when researcher Dr Pakeeran Siriratnam was keen to understand more about our Covid experiences. He was delighted when 229 people successfully responded. After much time and effort Dr Sisriratnam’s paper was published in a prominent journal just prior to Christmas. He has responded to the MAA request for feedback.
The MAA thanks everyone who generously assisting with this project.
Doctor Siriratnam writes –
Our experience working with MAA:
We are extremely grateful to Susan and MAA members for their generosity in completing our survey. We found our MG community extremely responsive and motivated to help each other and advance scientific knowledge.
Impact of our work.
As the pandemic experience in Australia was vastly different to other countries (with very low rates of COVID infections initially and strict lockdowns), the experiences and voices of our patients was very important to share. The major findings of our study published in an international journal was that of the 229 patients who responded, our population were highly vaccinated and had lower rates of hospitalisation for COVID-19 than in other countries. However, COVID-19 infection during the period of the survey did pose risks and many of our patients experienced negative psychosocial impacts. We hope our paper helps clinicians be aware of the range of impacts from the pandemic for our community.
Public access to the paper can be found at (https://rdcu.be/d410h). The abstract is as follows-
Abstract
Introduction/aims: Previous studies have demonstrated high morbidity and mortality in patients with myasthenia gravis (MG) who acquired COVID-19. We aimed to identify the impact of the pandemic on MG disease control, treatment and quality of life.
Methods: A prospective observational cohort study was conducted to identify the impact of the COVID-19 pandemic on Australian patients with MG. We conducted an online survey through Myasthenia Alliance Australia from May 2022 to July 2022.
Results: Among the 229 patients who responded to the survey, most patients had three (80; 34.9%) or four (116; 50.7%) doses of the COVID-19 vaccines, 65 (28.4%) had contracted COVID-19, with 6 patients (9.4%) requiring hospitalisation. A large proportion of patients responded that the pandemic had no impact on their MG disease control (123; 53.7%) or treatment (111; 48.5%). Most patients felt the pandemic had either a mild (111; 48.5%) or moderate (50; 21.8%) impact on their mood.
Conclusion: Our study provides a snapshot of the types of impacts experienced by myasthenic patients during the pandemic, in particular the psychosocial effects. As we continue to live with COVID-19, clinicians should consider its various impacts in the holistic management of their patients.