J Neurol Neurosurg Psychiatry 83:368-369 doi:10.1136/jnnp-2012-302253
  • ALS and FTD Special Edition

The changing landscape of non-invasive ventilation in amyotrophic lateral sclerosis

  1. Pamela J Shaw6
  1. 1Department of Respiratory Medicine, North Tyneside General Hospital, Tyne and Wear, UK
  2. 2Newcastle University, Tyne and Wear, UK
  3. 3Department of Palliative Medicine, Northumbria Healthcare NHS Foundation Trust and St Oswald's Hospice, Newcastle upon Tyne, UK
  4. 4Department of Neurology, Royal Victoria Infirmary, Newcastle upon Tyne, UK
  5. 5Department of Palliative Medicine, North Tyneside General Hospital, Tyne and Wear, UK
  6. 6Academic Neurology Unit, Department of Neuroscience, Sheffield Institute for Translational Neuroscience, University of Sheffield, Sheffield, UK
  1. Correspondence to Dr Stephen C Bourke, Northumbria Healthcare NHS Foundation Trust, North Tyneside General Hospital, Rake Lane, North Shields, NE29 8NH, UK; stephen.bourke{at}
  • Accepted 10 January 2012

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 …

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