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Lookup NU author(s): Professor Stephen BourkeORCiD, Dr Robert Bullock, Emeritus Professor John Gibson, Professor Pamela Shaw
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Objective: To evaluate the clinical application of non-invasive ventilation (NIV) in motor neuron disease (MND) in the UK. Method: We conducted a postal survey of the current clinical practice of all consultant neurologists in the UK, with a second mailing to non-responders after 6 weeks. The principal outcome measures assessed were: 1. the percentage of patients with MND receiving NIV, 2. access to a NIV service, 3. routine monitoring of respiratory function, and 4. influence of symptoms, respiratory function, rate of disease progression, level of disability and bulbar involvement on referral for NIV. Results: The response rate was 76%, 1719 new patients had been diagnosed in the preceding 12 months and a total of 2280 patients were under review. Of these, 126 were currently receiving NIV (5.5% of patients under review, estimated 2.6-3.5% of all MND patients). Most neurologists (172/265) had referred no patients for NIV in the preceding year, while three neurologists made 30% of all referrals nationally. Referral was based primarily on symptoms, and was influenced by the number of MND patients under review, level of disability, rate of disease progression and availability of a NIV service. Bulbar involvement was considered a relative contra-indication to NIV by 51 % of responders. Conclusions: In the UK, few patients with MND are treated with NIV. There is marked variation in clinical practice. This may reflect uncertainty about the role of non-invasive ventilation in MND, and emphasizes the need for a randomized controlled trial to assess the impact of NIV on quality of life and survival.
Author(s): Bourke SC, Williams TL, Bullock RE, Gibson GJ, Shaw PJ
Publication type: Article
Publication status: Published
Journal: Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders
Year: 2002
Volume: 3
Issue: 3
Pages: 145-149
Print publication date: 01/09/2002
ISSN (print): 1466-0822
ISSN (electronic): 1471-180X
Publisher: Informa Healthcare
URL: http://dx.doi.org/10.1080/146608202760834157
DOI: 10.1080/146608202760834157
PubMed id: 12495576
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