The following article is written by Dr. Marnie Graco from the Institute for Breathing and Sleep in Melbourne. Dr. Graco has been funded by MND Research Australia to conduct research to understand how Australians with MND are accessing and using non-invasive ventilation (NIV).
Motor neurone disease causes the muscles to weaken, including the muscles involved in breathing. Weakening respiratory muscles can lead to symptoms such as fatigue, difficulty sleeping and shortness of breath. Research has shown that using overnight breathing support or “non-invasive ventilation” (NIV) improves quality of life and can extend life for people with MND.
However, the best information we have suggests that just one in five people with MND in Australia try non-invasive ventilation. And we don’t know why!
Not everyone with MND will need or want to use NIV, but one in five is very low compared to other countries (NIV use is about 60% in the USA). We suspect that where people live may influence their access to health care, such as respiratory services. But there are likely to be many other reasons, and until we understand them, we cannot fix the problems.
Dr. Marnie Graco is a clinical researcher at Institute for Breathing and Sleep at the Austin Hospital in Melbourne. She is conducting a national survey to understand how many people with MND in Australia have been offered non-invasive ventilation, how many have tried the treatment, and how many are using non-invasive ventilation.
Importantly, the survey will also help to understand whether some people are more likely to access the treatment than others. For example, does where you live, how old you are, what type of MND you have, and many other factors, affect whether you can access or choose to use non-invasive ventilation?
All people living with MND in Australia who are registered with one of the State MND Associations will be invited to complete the survey. The survey will be sent by email from the State MND Associations in June 2023. It will take between 5 and 10 minutes to complete online, or if you prefer, Dr. Graco and her research team can help you to complete the survey over the phone. They can also organise to have an interpreter help you complete the survey in your preferred language.
The results of this survey – combined with in-depth interviews of people living with MND about their experiences – will be used to develop solutions to improve people’s access to non-invasive ventilation. Only with accurate information from the whole MND community can researchers and health care providers understand what you need and how to best work with you to improve how health care is provided.
Further information on NIV can be found on MND Australia's factsheet Breathing and MND: medications and non-invasive ventilation and through the MND Decision Tool.
If you would like more information about Dr. Graco’s research, please email: NIVinMND.Research@austin.org.au or text/call: 0468 862 693.