Abstract

Non-invasive ventilation (NIV) is a mainstay treatment in neuromuscular disease, improving survival and quality of life (QoL) in motor neurone disease (MND). The best model for NIV initiation is unknown. This pilot study examined the feasibility of NIV@Home initiation. <b>Methods:</b> Consecutive patients were stratified by disease (MND or Other diagnoses) and randomised to NIV@Home (single-day NIV initiation at home with remote usage monitoring, and telephone clinical review if weekly average usage was below 4hrs/day) or a usual care Control (single-day in-hospital NIV initiation with in-laboratory polysomnography follow-up, usage monitoring, but only patient-initiated clinical follow-up). Participants were followed for 12-weeks or until death. Outcomes were NIV usage (hours/day; categorical adherence &gt;4 hours/day), QoL, carer burden and semi-structured qualitative interviews of NIV initiation experience. <b>Results:</b> From 8/20 to 8/21, 201 patients (MND=108) were referred for NIV. 49 were eligible (MND=43) and 22 (MND=19) were randomised and implemented. No significant, between-group difference was observed in QoL (p=0.7), carer burden (p=0.6) or adherence; hrs/night (NIV@Home 2.4[1.5-9.2] vs Control 6.0[1.8-8.0], p=0.3) or adherent proportion (NIV@Home=27%, Control=64%, p=0.2). Thematic analysis revealed “positive experience” and “staff professionalism” in both groups; “convenience” was reported as an advantage for NIV@Home and “travel” a disadvantage in the Control group. <b>Conclusion:</b> No differences in NIV usage or QoL were found, although there was a trend to poorer NIV use in the NIV@Home group.

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