Abstract

Background: The purpose of this study was to: 1) describe current non-invasive ventilation (NIV) usage patterns amongst Canadian ALS healthcare providers; 2) compare/contrast with previous practice patterns; and 3) explore barriers to NIV access encountered by current practitioners. Methods: Healthcare professionals (including physicians, respiratory therapists, and nurses) at major Canadian ALS care centres were sent a web-based survey. Participants were asked to provide input on practice demographics, access and initiation of NIV, and follow-up of NIV. Quantitative data were analyzed with descriptive and comparative statistics, while qualitative data were analyzed using interpretative phenomenological analysis method to identify emergent themes. Results: 26 participants responded. Median NIV usage was 39% (range 10-100%), about double of what was previously reported (18%). Mean times from referral to routine and urgent NIV initiation were 13 (95% CI 9-17) and 5 (95% CI 3-7) days respectively. NIV was most commonly initiated in clinic (68%), while 38% report having access to home-NIV initiation. Lack of social support (62%) and cognitive impairment (46%) were the most common deterrents to initiating NIV. Similar to what is previously reported, barriers to access can be stratified to patient, clinical, institutional, and regional levels. Conclusions: Despite increased usage and improved access, there remain considerable barriers for ALS patients to receive NIV.

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