A multi-centre randomised controlled trial of polysomnographic titration of non-invasive ventilation in motor neurone disease
Motor neurone disease (MND) is a rare, neurodegenerative disorder where progressive motor weakness leads to death, usually from respiratory failure. Every day in Australia 2 people are diagnosed with and another 2 people die from MND Non-invasive ventilation (NIV) is positive pressure delivered via a face mask to assist breathing. NIV effectively supports breathing overnight as people with MND become weaker from disease progression. There is no known cure for MND, however NIV improves survival and quality of life. In an over 20 year cohort study, our team has demonstrated that the survival benefit NIV provides in MND is 13 months overall; much larger than the 2–3 months increase in survival from the mainstay drug (Riluzole).
Even though NIV appears to improve survival in MND, many are unable to use it for more than 4 hours per day; 4 hours per day is the usage threshold associated with the greatest survival benefit. We have recently demonstrated in a single centre randomized controlled study that usage can be brought above 4 hours per day by improving the coordination of breathing between the person with MND and their new ventilator, by adding an overnight sleep study to fine tune NIV settings to the usual daytime commencement of NIV.
Respiratory care is a critical concern for the MND community; a recent community survey identified clinical trials and studies of respiratory supports as the most important research concern of people living with MND and their families. To meet this community need and to extend our findings, we propose a nationwide, randomized controlled trial that will determine if the use of an overnight, in-laboratory sleep study can increase NIV usage. At the final visit, seven weeks after randomization, participants will be included in an open-label cohort embedded within the Australian MND registry. This proposal includes a comprehensive knowledge translation strategy that is necessary to support practice change and the implementation of findings
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