O051 Understanding the uptake of non-invasive ventilation in motor neurone disease: results of a national survey

Abstract Introduction Non-invasive ventilation (NIV) is an effective therapy for extending survival and enhancing quality of life in people with motor neurone disease (pwMND). According to Australian registry data from 2005-2015, just 19% of pwMND ever commenced NIV. This study aimed to estimate the current rates of NIV uptake among pwMND and identify demographic factors associated with its uptake. Methods National cross-sectional survey. PwMND (or their carers) were invited to complete an online survey about their NIV use and health care experiences. Multivariate logistic regression modelling investigated associations between various demographic factors and NIV uptake. Results 224 responses were received. Mean(SD) age was 64(11) years, 62% were male, median(IQR) time since diagnosis was 2(1-5) years. 46%(n=104) were using NIV; 6%(n=14) had started NIV and stopped; 4%(n=9) were referred and waiting to start; 3%(n=7) had declined NIV; 14%(n=32) had discussed NIV with a health care professional (HCP) but not been referred; and 26%(n=58) had never discussed NIV with a HCP. NIV uptake was significantly (p<0.05) associated with being male, residing in Victoria, residing in a metropolitan area, and longer time since diagnosis. Conclusion This study suggests that the uptake of NIV by pwMND in Australia is higher than previously reported, though registry-based cohort studies are needed to confirm this. Access to this highly effective therapy appears to be related to the person’s gender and where they live. A deeper understanding of the determinants and barriers to NIV uptake will enable targeted strategies that reduce health care inequity and improve outcomes for pwMND.