The Amyotrophic Lateral Sclerosis Functional Rating Scale Predicts Survival Time in Amyotrophic Lateral Sclerosis Patients on Invasive Mechanical Ventilation

CHEST Journal ◽  
2007 ◽  
Vol 132 (1) ◽  
pp. 64-69 ◽  
Author(s):  
Daniele Lo Coco ◽  
Santino Marchese ◽  
Vincenzo La Bella ◽  
Tommaso Piccoli ◽  
Albino Lo Coco
Keyword(s):  
Mechanical Ventilation ◽  
Amyotrophic Lateral Sclerosis ◽  
Survival Time ◽  
Rating Scale ◽  
Invasive Mechanical Ventilation ◽  
Lateral Sclerosis

scholarly journals Passive Versus Active Circuit During Invasive Mechanical Ventilation in Subjects With Amyotrophic Lateral Sclerosis

2018 ◽  
Vol 63 (9) ◽  
pp. 1132-1138 ◽  
Author(s):  
Elisa De Mattia ◽  
Elisa Falcier ◽  
Andrea Lizio ◽  
Christian Lunetta ◽  
Valeria A Sansone ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
Amyotrophic Lateral Sclerosis ◽  
Invasive Mechanical Ventilation ◽  
Active Circuit ◽  
Lateral Sclerosis

scholarly journals MANAGEMENT OF THE PATIENT WITH ADVANCED AMYOTROPHIC LATERAL SCLEROSIS: THE CAREGIVER’S OPINION

2016 ◽  
Vol 15 (1) ◽  
pp. 24-29
Author(s):  
Maria Rivara ◽  
◽  
Cornelius Barlascini ◽  
Paolo Banfi ◽  
Antonello Nicolini ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
Amyotrophic Lateral Sclerosis ◽  
Invasive Mechanical Ventilation ◽  
Level Of Care ◽  
Burden Of Care ◽  
Stage Disease ◽  
Heavy Burden ◽  
End Stage ◽  
Lateral Sclerosis

Objectives. The possibility of prolonging and augmenting the quality of life of respiratory patients in end-stage disease and in particular neuromuscular disease patients depends on an increased level of care. Amyotrophic lateral sclerosis (ALS) is a neurological disease characterized by a fast progressive impairment of respiratory function which leads to mechanical ventilation and high burden of care. A specifically designed questionnaire was administered to caregivers to analyze the level of care provided to these patients in our districts. Patients and methods. The study population consisted of 70 patients (44 males and 26 females). Of the 70 patients, 46 were being treated with non-invasive ventilation and 24 with invasive mechanical ventilation. The questionnaire was divided in two parts: questions 1 to 13 investigated life conditions and 14 to 22 the quality of care provided. Results. The patients studied present a heavy burden of care and this is in relation to the quantity of respiratory aids prescribed. The symptom which created statistically significant problems for care was breathlessness, as is often reported in the literature. The presence of homecare tended to create conditions of greater serenity for the caregivers. Conclusions. This study shows that the burden of care in end-stage ALS patients is very onerous, and it can help to point out problems not sufficiently contemplated in healthcare planning.

scholarly journals Causal inference methods to study gastric tube use in amyotrophic lateral sclerosis

Neurology ◽  
2017 ◽  
Vol 89 (14) ◽  
pp. 1483-1489 ◽  
Author(s):  
Erin McDonnell ◽  
David Schoenfeld ◽  
Sabrina Paganoni ◽  
Nazem Atassi
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Causal Inference ◽  
Survival Time ◽  
Gastric Tube ◽  
Rating Scale ◽  
Tube Placement ◽  
Inference Models ◽  
Nested Models ◽  
Inference Methods ◽  
Lateral Sclerosis

Objective:To estimate effects of gastric tube (G-tube) on survival and quality of life (QOL) in people with amyotrophic lateral sclerosis (ALS) correcting for confounding by indication inherent in nonrandomized observational data.Methods:To complement a recent causal inference analysis, which concluded that G-tube placement increases the hazard of death, permanent assisted ventilation, or tracheostomy by 28%, we fit causal inference models on a different sample of 481 patients with ALS enrolled in a recent clinical trial of ceftriaxone. Forward selection identified predictors of G-tube placement. Effects of G-tube on survival and QOL were estimated using structural nested models and marginal structural models, accounting for predictors of G-tube treatment.Results:Forced vital capacity and the total score and bulbar subscale of the revised ALS Functional Rating Scale best predicted G-tube placement. Correcting for these confounders, G-tube placement decreased survival time by 46% (p < 0.001) and had no effect on QOL (p = 0.078). Sensitivity survival analyses varied in significance, but none revealed a survival benefit.Conclusions:In the absence of randomization, causal inference methods are necessary to correct for time-varying confounding. G-tube placement may have a negative effect on survival with no QOL-related benefit for people with ALS. A randomized controlled trial is warranted to further evaluate the efficacy of this widely used intervention.Clinicaltrials.gov identifier:NCT00349622.Classification of evidence:This study provides Class III evidence that for patients with ALS, G-tube placement decreases survival time and does not affect QOL.

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