Survival and quality of life after tracheostomy for acute respiratory failure in patients with amyotrophic lateral sclerosis

J Crit Care. 2011 Jun;26(3):329.e7-14. doi: 10.1016/j.jcrc.2010.06.003. Epub 2010 Jul 23.


Background: Acute respiratory failure (ARF) is a common event in the advanced stage of amyotrophic lateral sclerosis (ALS) and may be rarely a presenting symptom. Frequently, such patients require intubation and mechanical ventilation (MV) and, in a large proportion, receive tracheostomy, as a consequence of weaning failure. In our study, we investigated postdischarge survival and quality of life (QoL) after tracheostomy for ARF in patients with ALS.

Design: This study is a retrospective chart review combined with prospective evaluation of QoL and degree of depression.

Setting: The study was conducted in an adult, respiratory intensive care unit in a university hospital.

Patients: Amyotrophic lateral sclerosis patients with tracheostomy for ARF between January 1, 1995 and April 30, 2008 were investigated.

Intervention and measurements: (a) A retrospective chart review was used and (b) prospective administration of the 11-item short-form Life Satisfaction Index (LSI-11) and Beck Depression Inventory (BDI) questionnaires to survivors, at least 1 month after discharge from hospital, was performed.

Results: Sixty patients were studied retrospectively. None of the patients died in the hospital after tracheostomy. Forty-two patients (70%) were discharged completely MV dependent, and 17 patients (28.3%) were partially MV dependent. One patient (1.6%) was liberated from MV. The median survival after tracheostomy was 21 months (range, 0-155 months). The survival rate was 65% by 1 year and 45% by 2 years after tracheostomy. Survival was significantly shorter in patients older than 60 years at tracheostomy, with a hazard ratio of dying of 2.1 (95% confidence interval, 1.1-3.9). All 13 survivors completed the LSI-11 and BDI. The mean (SD) cumulative score on the LSI-11 was 9.3 (3.6; range, 0-22; higher values indicating better QoL), similar to that obtained from a control group consisting of individuals with ALS who had not received tracheostomy (9.3 ± 4.3) and to that reported for persons in the general population. Only 15% of the tracheostomized patients (2/13) were severely depressed, according to BDI; 11 of 13 patients reported a positive view of tracheostomy and said that they would want to undergo this procedure if they could make the decision again.

Conclusions: Patients with ALS have a high chance of long-term survival after tracheostomy for ARF. Although administered at the time of a respiratory crisis without being discussed in advance, tracheostomy shows good acceptance and results in acceptable QoL.

MeSH terms

  • Acute Disease
  • Aged
  • Amyotrophic Lateral Sclerosis / complications*
  • Amyotrophic Lateral Sclerosis / mortality
  • Amyotrophic Lateral Sclerosis / surgery
  • Depression / epidemiology
  • Female
  • Humans
  • Male
  • Middle Aged
  • Patient Satisfaction / statistics & numerical data
  • Prospective Studies
  • Quality of Life / psychology*
  • Respiratory Insufficiency / etiology
  • Respiratory Insufficiency / mortality*
  • Respiratory Insufficiency / surgery*
  • Retrospective Studies
  • Survival Rate
  • Tracheostomy*
  • Treatment Outcome