Pulmonary evaluation and prevalence of non-invasive ventilation in-patients with amyotrophic lateral sclerosis: A multicenter survey

Jairo Melo, E. Iturriaga, Stephanie M Levine, A. Amato, Carlayne E Jackson, Antonio R Anzueto

Research output: Contribution to journalArticle

Abstract

Purpose: Despite the relationship between respiratory status and the probability of survival in Amyotropnic Lateral Sclerosis (ALS) patients, there is a great variability in the approach to monitor pulmonary function among centers. This study describes the different methods used to monitor and evaluate pulmonary function and the prevalence of non-invasive ventilation (NIV) in ALS patients. Methods: All Muscular Dystrophy Association and ALS association multidisciplinary ALS Centers were invited to participate. Each participating center completed a questionnaire regarding their ALS patients. Results: Twenty centers reported information on 2357 ALS patients. The mean interval time for routine follow-up was 3 months (range 2-6). In five centers, patients were routinely evaluated by a pulmonologist; and two never consulted one. PFTs were performed in 17/20 institutions. Inspiratory and expiratory pressures, arterial blood gases and serum chloride were followed in 3/20 centers. The criterion to initiate NIV in most of the centers was a FVC between 20-40% of predicted. 360 patients (15%) were on NIV (BIPAP 13%, CPAP/IPPB 2%) and 66 (2.8%) had tracheostomy. 1155 (49%) of the patients had a "do not resuscitate" status. Conclusions: There is a great variability in the approach to monitor pulmonary function among ALS centers. NIV is used only in a small number of patients with ALS. Clinical Implications: Given the modest effects of current treatment, it becomes imperative to optimize the respiratory management of ALS patients. The impact on quality of life and mortality of a protocol aimed to detect and treat early deterioration in pulmonary function needs to be prospectively studied.

Original languageEnglish (US)
JournalChest
Volume114
Issue number4 SUPPL.
StatePublished - Oct 1998

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Noninvasive Ventilation
Motor Neuron Disease
Amyotrophic Lateral Sclerosis
Lung
Intermittent Positive-Pressure Breathing
Surveys and Questionnaires
Information Centers
Muscular Dystrophies
Tracheostomy
Chlorides
Arterial Pressure
Gases
Quality of Life
Survival

ASJC Scopus subject areas

  • Pulmonary and Respiratory Medicine

Cite this

@article{fc547532063642469db4af84f5d1861a,
title = "Pulmonary evaluation and prevalence of non-invasive ventilation in-patients with amyotrophic lateral sclerosis: A multicenter survey",
abstract = "Purpose: Despite the relationship between respiratory status and the probability of survival in Amyotropnic Lateral Sclerosis (ALS) patients, there is a great variability in the approach to monitor pulmonary function among centers. This study describes the different methods used to monitor and evaluate pulmonary function and the prevalence of non-invasive ventilation (NIV) in ALS patients. Methods: All Muscular Dystrophy Association and ALS association multidisciplinary ALS Centers were invited to participate. Each participating center completed a questionnaire regarding their ALS patients. Results: Twenty centers reported information on 2357 ALS patients. The mean interval time for routine follow-up was 3 months (range 2-6). In five centers, patients were routinely evaluated by a pulmonologist; and two never consulted one. PFTs were performed in 17/20 institutions. Inspiratory and expiratory pressures, arterial blood gases and serum chloride were followed in 3/20 centers. The criterion to initiate NIV in most of the centers was a FVC between 20-40{\%} of predicted. 360 patients (15{\%}) were on NIV (BIPAP 13{\%}, CPAP/IPPB 2{\%}) and 66 (2.8{\%}) had tracheostomy. 1155 (49{\%}) of the patients had a {"}do not resuscitate{"} status. Conclusions: There is a great variability in the approach to monitor pulmonary function among ALS centers. NIV is used only in a small number of patients with ALS. Clinical Implications: Given the modest effects of current treatment, it becomes imperative to optimize the respiratory management of ALS patients. The impact on quality of life and mortality of a protocol aimed to detect and treat early deterioration in pulmonary function needs to be prospectively studied.",
author = "Jairo Melo and E. Iturriaga and Levine, {Stephanie M} and A. Amato and Jackson, {Carlayne E} and Anzueto, {Antonio R}",
year = "1998",
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language = "English (US)",
volume = "114",
journal = "Chest",
issn = "0012-3692",
publisher = "American College of Chest Physicians",
number = "4 SUPPL.",

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TY - JOUR

T1 - Pulmonary evaluation and prevalence of non-invasive ventilation in-patients with amyotrophic lateral sclerosis

T2 - A multicenter survey

AU - Melo, Jairo

AU - Iturriaga, E.

AU - Levine, Stephanie M

AU - Amato, A.

AU - Jackson, Carlayne E

AU - Anzueto, Antonio R

PY - 1998/10

Y1 - 1998/10

N2 - Purpose: Despite the relationship between respiratory status and the probability of survival in Amyotropnic Lateral Sclerosis (ALS) patients, there is a great variability in the approach to monitor pulmonary function among centers. This study describes the different methods used to monitor and evaluate pulmonary function and the prevalence of non-invasive ventilation (NIV) in ALS patients. Methods: All Muscular Dystrophy Association and ALS association multidisciplinary ALS Centers were invited to participate. Each participating center completed a questionnaire regarding their ALS patients. Results: Twenty centers reported information on 2357 ALS patients. The mean interval time for routine follow-up was 3 months (range 2-6). In five centers, patients were routinely evaluated by a pulmonologist; and two never consulted one. PFTs were performed in 17/20 institutions. Inspiratory and expiratory pressures, arterial blood gases and serum chloride were followed in 3/20 centers. The criterion to initiate NIV in most of the centers was a FVC between 20-40% of predicted. 360 patients (15%) were on NIV (BIPAP 13%, CPAP/IPPB 2%) and 66 (2.8%) had tracheostomy. 1155 (49%) of the patients had a "do not resuscitate" status. Conclusions: There is a great variability in the approach to monitor pulmonary function among ALS centers. NIV is used only in a small number of patients with ALS. Clinical Implications: Given the modest effects of current treatment, it becomes imperative to optimize the respiratory management of ALS patients. The impact on quality of life and mortality of a protocol aimed to detect and treat early deterioration in pulmonary function needs to be prospectively studied.

AB - Purpose: Despite the relationship between respiratory status and the probability of survival in Amyotropnic Lateral Sclerosis (ALS) patients, there is a great variability in the approach to monitor pulmonary function among centers. This study describes the different methods used to monitor and evaluate pulmonary function and the prevalence of non-invasive ventilation (NIV) in ALS patients. Methods: All Muscular Dystrophy Association and ALS association multidisciplinary ALS Centers were invited to participate. Each participating center completed a questionnaire regarding their ALS patients. Results: Twenty centers reported information on 2357 ALS patients. The mean interval time for routine follow-up was 3 months (range 2-6). In five centers, patients were routinely evaluated by a pulmonologist; and two never consulted one. PFTs were performed in 17/20 institutions. Inspiratory and expiratory pressures, arterial blood gases and serum chloride were followed in 3/20 centers. The criterion to initiate NIV in most of the centers was a FVC between 20-40% of predicted. 360 patients (15%) were on NIV (BIPAP 13%, CPAP/IPPB 2%) and 66 (2.8%) had tracheostomy. 1155 (49%) of the patients had a "do not resuscitate" status. Conclusions: There is a great variability in the approach to monitor pulmonary function among ALS centers. NIV is used only in a small number of patients with ALS. Clinical Implications: Given the modest effects of current treatment, it becomes imperative to optimize the respiratory management of ALS patients. The impact on quality of life and mortality of a protocol aimed to detect and treat early deterioration in pulmonary function needs to be prospectively studied.

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