Does tracheostomy ventilation in MND in the UK lead to improved survival

Introduction: Some UK centres offer tracheostomy ventilation (TV) to patients with MND. There is no UK data on survival in these patients. Aim: There have been no formal studies to evaluate survival in patients with MND in the UK who have TV. It is hypothesised that in patients with MND, TV will lead to improved survival as these patients usually die from respiratory compromise. Method: UK ventilation centres were approached to retrospectively review MND patients who had started TV between 1st April 2013 and  31st March 2018. Results: 69 MND patients commenced TV in 5 years. 81% (n=56) was commenced following emergency admission due to respiratory failure. 8 patients were weaned and managed with NIV until death, mean survival in those weaned was 28.8 months. As of 31st March 2018, 25 patients had died, 12 were described as sudden. 1 year survival was 76% for all patients who received TV. For those who had non-invasive ventilation (NIV) and then TV, 95% were alive 1 year after initiation of NIV. 13 patients received elective tracheostomy, these had a tendency to improved survival compared to those receiving emergency tracheostomy (mean 34v24 months). Conclusion: Use of TV in MND in the UK is associated with an excellent 1 year survival; elective patients demonstrate improved survival over those admitted acutely. In addition, weaning from TV onto NIV is possible and is associated with comparable 1 year survival to those who continue to have TV.