Department of Developmental Disability Neuropsychiatry (3DN)

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

Project Main Description

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. The aim of this study is 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. By comparing our findings in people with MND to those of people with other progressive neurological disorders and the NSW general population, we will understand 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.

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