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J Neurol Neurosurg Psychiatry 83:371-376 doi:10.1136/jnnp-2011-300480
  • ALS and FTD Special Edition
  • Research paper

Non-invasive ventilation in motor neuron disease: an update of current UK practice

  1. Stephen C Bourke6
  1. 1Department of Palliative Medicine, St Oswald's Hospice, Newcastle-upon-Tyne, UK
  2. 2Department of Neurology, Royal Victoria Infirmary, Newcastle-upon-Tyne, UK
  3. 3Department of Palliative Medicine, North Tyneside General Hospital, Tyne and Wear, UK
  4. 4Department of Neurology, Sheffield Institute for Translational Neuroscience, University of Sheffield, Sheffield, UK
  5. 5Newcastle University, Tyne and Wear, UK
  6. 6Department of Respiratory Medicine, North Tyneside General Hospital, Tyne and Wear, UK
  1. Correspondence to Dr C O'Neill, St Oswald's Hospice, Regent Avenue, Newcastle-upon-Tyne NE3 1EE, UK; catherine.oneill{at}doctors.org.uk
  1. Contributors SCB conceived and obtained funding for the survey. SCB and CO'N designed the survey. All authors substantially contributed to the questionnaire design. CO'N acquired the data and CO'N and SCB analysed the data. CO'N prepared the paper. All authors critically reviewed the paper.

  • Received 12 May 2011
  • Revised 15 June 2011
  • Accepted 7 July 2011
  • Published Online First 17 August 2011

Abstract

Background In motor neurone disease (MND), respiratory muscle weakness causes substantial morbidity, and death is usually due to respiratory failure. Non-invasive ventilation (NIV) improves symptoms, quality of life and survival, but previous surveys showed that few patients with MND received NIV.

Methods A postal survey was conducted of the clinical application of NIV in MND among consultant neurologists in the UK. The results were compared with those of a similar survey done in 2000.

Findings Over 12 months, 612 patients were referred for NIV of whom 444 were successfully established on treatment (72.5% success rate). 38% of responding neurologists assessed respiratory function at presentation and 20% routinely monitored respiratory function; 32% relied on symptoms as the only criterion for NIV referral and 43% used a combination of symptoms and physiological impairment. 75% of responding neurologists accessed specialist palliative care services for their patients towards the end of life and 69% at an earlier stage.

Interpretation Compared with 2000, there has been a marked increase in the number of patients referred for, and currently using, NIV (2.6 and 3.4-fold, respectively). The proportion successfully established on NIV has also increased, suggesting more appropriate selection and/or improvement in the methods of using NIV in this challenging group of patients. However, monitoring of respiratory function is suboptimal and uncontrolled oxygen is sometimes used inappropriately before the terminal phase.

Footnotes

  • See ALS and FTD Special Edition, p 355, 368, 370

  • Funding Motor Neuron Disease Association.

  • Competing interests None.

  • Ethics approval Confirmation was received from the Newcastle and North Tyneside 1 Research Ethics Committee.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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