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Spotlight on research: Empowering decision-making about care

Science in brief
The researchers assembled an expert panel of MND patients, carers, health professionals, researchers and State MND Association representatives. They asked the panel members to identify aspects of care that would benefit from decision tool support. From an initial list of 56 topics, six high-priority areas were chosen to develop into tools. These were gastrostomy, assisted ventilation, genetic testing, end of life care location, communication equipment and advance care planning. 

People living with MND need services that provide timely, skilled care in response to changing priorities and needs. Decision support tools that are co-designed with patients, carers and health professionals can be tailored to a patient’s specific needs, to optimise their participation in decision-making with health professionals, and promote patient and carer quality of life. The decision-making model that underpins this work has informed the MND guidelines for the UK National Institute for Health and Care Excellence (NICE). The NICE Guidelines aim to improve care for people with MND from the time of diagnosis to managing symptoms and preparing for end of life care.

Next steps
Development of the decision-making tools is underway, following linkage of the project with Macquarie University’s Professional and Community Engagement (PACE) program. Undergraduate students from science, engineering and IT are developing web-based prototypes of the tools, for patients, families and health professionals to use on tablet or computer. This study is also linked to projects investigating decision-making for genetic testing and gastrostomy. Once prototypes are complete, they will be reviewed by the expert panel, and then undergo usability testing in MND clinics.

Article sourced from MND Research Institure of Australia report '$25Million, 25 Milestones: Changing the future of MND'. 


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