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In amyotrophic lateral sclerosis (ALS), non-invasive ventilation (NIV) improves survival1–6 and quality of life.1 2 5 7 Surveys in Europe,8–12 the USA13–16 and Canada17 show marked variation in the use of NIV, within and between different countries, and that only a minority of patients receive NIV. Of importance, when comparing surveys, the selection of the population surveyed influences results, as shown by the variation in NIV use between specialist centres,13 the ALS CARE database18 and the control arm of a clinical trial16 in the USA over a similar time period. Fortunately, reliable data are available on the change in NIV use over time; the proportion of patients treated with NIV has increased over periods spanning the publication of the Practice Parameter Guidelines9 15 and the publication of our randomised controlled trial of NIV in ALS.2 11
Recent surveys, including our own in the UK11 and that by Ritsma et al in Canada,17 have shown there is a lack of consensus about when to initiate NIV, which in turn contributes to variation in practice. Of importance, Farrero and colleagues established that, compared with historical controls, the introduction of a protocol directing the assessment of respiratory symptoms and function every 3 months and stipulating criteria for initiation of NIV was associated with a reduction in the initiation of NIV in an emergency and use of tracheostomy …