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Keywords:

  • Amyotrophic lateral sclerosis;
  • non-invasive ventilation;
  • invasive ventilation;
  • enteral nutrition;
  • population-based study

Abstract

Objective: We performed a population-based study to assess amyotrophic lateral sclerosis (ALS) survival after non-invasive ventilation (NIV), invasive ventilation (IV), and enteral nutrition (EN).

Methods: We included patients diagnosed from 2000 to 2009 in Modena, where a prospective registry and a Motor Neuron Diseases (MND) Centre have been active since 2000.

Results: Of the 193 incident cases, 47.7% received NIV, 24.3% received tracheostomy, and 49.2% received EN. A total of 10.4% of the patients refused NIV, 31.6% refused IV, and 8.7% refused EN. The median survival times after NIV, IV, and EN were 15, 19, and 9 months, respectively. Of the tracheostomized patients, 79.7% were discharged from the hospital; 73.0% were discharged to home. The median survival times for tracheostomized patients who were cared for at home and in nursing homes were 43 and 2 months, respectively. The multivariate analysis demonstrated that the place of discharge was the only independent prognostic factor after IV (P<0.01).

Conclusions: Service organizations may promote adherence to NIV, IV, EN and influence post-procedure survival. These data may be useful in defining health plans regarding advanced ALS care and in patient counseling. © 2014 Wiley Periodicals, Inc.