Identifying priorities for a national motor neurone disease (amyotrophic lateral sclerosis) guideline: results from an Australian online survey.

Abstract

To identify the priorities of people living with motor neurone disease (MND), their carers, asymptomatic genetic carriers, and healthcare professionals (HCPs) in Australia, to inform the development of a national MND care guideline. An anonymous online survey was distributed via MND organisations and groups to the Australian MND community. Two hundred and fourteen individuals completed the survey. Of those, 44.8% (<i>n</i> = 96) were HCPs, with the remaining consisting of people living with MND, genetic carriers, and carers. The following areas were rated as extremely important and should be included in the guideline: diagnosis, service delivery models, clinical care management, caregiver support, and palliative care; while views on genetic testing and cognitive assessment were mixed. Participants highlighted a need for holistic care which considered emotional/psychological and physical aspects of MND. People with MND and their carers want the Australian MND care guideline to highlight proactive and coordinated support prioritising quality of life, while maintaining independence for as long as possible. Identifying priorities is a fundamental step that will shape the forthcoming Australian MND care guideline. This methodology ensures the voices of those with lived experience and interest holders are incorporated from the outset.