Using big data to understand the health status and service use of people with motor neurone disease

Past project

The aim of this study was to describe and understand the mental health needs of people with MND and how they use mental health services through the analysis of linked data from a large sample of people with MND in NSW. We compared our findings in people with MND to those of people with other progressive neurological disorders to identify the specific needs of people with MND. This will help to inform the development of specific strategies that will allow mental health services to better meet the needs of people with MND.

People with motor neurone disease (MND) have complex care needs and require multidisciplinary support from a range of generic and specialist health services. Few studies have investigated health service use of people with MND, and none to date have had a specific focus on mental health service use. This is a significant gap given that 15% of people with MND will develop frontotemporal dementia, 17% present with affective disorders, and that neuropsychiatric symptoms (e.g. apathy, disinhibition, and stereotypic behaviour) have been found to be present before the onset of motor symptoms.

Results resources

The fact sheets below summarise the results of the study and what this may mean for people with motor neurone disease. Fact sheets have been developed for people with MND; their families, friends, and carers; and for health professionals.

Fact sheets

For people with MND

For people with MND- Plain English version

For families, friends, and carers of people with MND

For health professionals – fact sheet

For health professionals – poster – A 1-page summary poster

Postcard to take to GPs and neurologistsThis postcard can be printed and taken to your doctor. The front side of the postcard contains information for people with MND. The other side provides information for your doctor about this study.


Detailed results report

This 6-page report provides more detailed information on the method and results of this study.


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