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Home tracheotomy mechanical ventilation in patients with amyotrophic lateral sclerosis: causes, complications and 1-year survival
  1. Jesús Sancho1,2,
  2. Emilio Servera1,2,3,
  3. José Luis Díaz1,2,3,
  4. Pilar Bañuls1,2,
  5. Julio Marín2,3
  1. 1Respiratory Care Unit, Respiratory Medicine Department, Hospital Clínico Universitario, Valencia, Spain
  2. 2Research Group for Respiratory Problems in Neuromuscular Diseases, Fundación para la Investigación HCUV-INCLIVA, Valencia, Spain
  3. 3Universitat de Valencia, Valencia, Spain
  1. Correspondence to Dr Jesús Sancho, Respiratory Care Unit, Respiratory Medicine Department, Hospital Clínico Universitario, Avd Blasco Ibañez 17.46010 Valencia, Spain; cchinesta{at}


Background Home tracheotomy mechanical ventilation (HTMV) can prolong survival in patients with amyotrophic lateral sclerosis (ALS) when non-invasive ventilation (NIV) fails, but knowledge about HTMV is scarce. The aim of this study was to determine the causes of tracheotomy and the main issues of 1-year HTMV in a cohort of patients with ALS.

Methods A prospective study of all patients needing HTMV was performed in a referral respiratory care unit (RCU) from April 2001 to January 2010. Patients' informed decisions about HTMV were fully respected. Caregivers were trained and could telephone the RCU. Hospital staff made home visits.

Results All patients (n=116) agreed to participate and a tracheotomy was needed for 76, mainly due to bulbar dysfunction. Of the 38 who had a tracheotomy, in 21 it was performed in an acute setting and in 17 as a non-emergency procedure. In 19 patients the tracheotomy was related to the inadequacy of mechanically assisted coughing (MAC) to maintain normal oxygen saturation. During HTMV, 19 patients required hospitalisation, 12 with respiratory problems. The 1-year survival rate was 78.9%, with a mean survival of 10.39 months (95% CI 9.36 to 11.43). Sudden death was the main cause of death (n=9) and only one patient died from respiratory causes. No predictive factors for survival were found.

Conclusions Besides NIV inadequacy, the ineffectiveness of mechanically assisted coughing appears to be a relevant cause of tracheotomy for patients with ALS with severe bulbar dysfunction. Patients choosing HTMV provided by a referral RCU could have a good 1-year survival rate, respiratory problems being the main cause of hospitalisation but not of death.

  • Amyotrophic lateral sclerosis
  • survival
  • respiratory failure
  • long-term mechanical ventilation
  • tracheotomy
  • assisted ventilation

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  • See Editorial, p 932

  • Competing interests JS, ES, JLD and JM have no financial relationship with any commercial entity that has an interest in the subject of this manuscript. PB is supported by a grant from the Fundación para la Investigación del Hospital Clínico sponsored by Vital Aire Inc.

  • Ethics approval This study was conducted with the approval of the ethics committee of the Hospital Clinico Universitario, Valencia.

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

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