The Myasthenia Alliance Australia (MAA) supports and promotes research that is specific to the experience of Myasthenia Gravis (MG) patients in Australia. But we would not be able to do this without the essential and valuable contribution of Australians with MG.

One current project is VALUE-Ig, which aims to generate evidence to inform the optimal use of immunoglobulin (Ig) in four patient cohorts, including MG. This study is being conducted by a research team at Monash University Centre for Health Economics and is funded by the Australian Government’s Medical Research Future Fund.

VALUE-Ig includes a Discrete Choice Experiment (DCE) to explore the treatment preferences of MG patients in Australia. The first round of focus groups to help design this DCE study has been completed and we sincerely thank the MG patients who gave their time and insights to this important research. Please read below for an update from the VALUE-Ig research team. To find out more, you can contact the team directly at value.ig@monash.edu or reach out to the MAA by calling 1800 802 568 or emailing info@mgaq.org.au or info@myasthenia.org.au.

-

The researchers thank all the MG patients who participated in the first focus group sessions. Sharing their lived experiences helped us better understand MG and design our patient preferences survey, which will be launched in 2025. Overall, 19 patients joined the sessions, ranging in age from 35 to 82. Among them, 12 were female and 7 were male. The patients were from various regions: 9 from NSW, 5 from Vic, 4 from QLD, and 1 from WA.

They frequently highlighted the importance of improving healthcare workers’ knowledge of MG and the availability of neurologists to ensure timely access to necessary treatments. There were also discussions about how location impacted the accessibility of health services. Especially those living in regional areas felt that they had less options for accessing treatments.

They helped us revise the descriptions of our hypothetical scenarios that will be presented to respondents of our future survey. During the sessions, MG patients discussed their priorities when receiving treatment for their MG in mild exacerbation, severe exacerbation, and maintenance treatment conditions. They listed the most commonly experienced treatment side effects and identified which side effects were most important to them when receiving treatment. Gastrointestinal side effects were the most consistently reported, while the side effects patients were most concerned about varied widely. Reported side effects of MG medications included fatigue, weight gain, depression, line infection risk, blood clotting risk, increased risk of skin cancer and diabetes, hair loss, bone loss and poor sleep. They acknowledged their ongoing need to balance the side effects of treatment and their MG symptoms.

Although it was not within the scope of our focus group sessions, it is important to note that the session evaluation survey results indicate that many MG patients are interested in learning more about new treatments available.

Monash University
Centre for Health Economics | Monash Business School
Level 5, Building H, Caulfield Campus
900 Dandenong Road
Caulfield East VIC 3145
Australia