Continuous noninvasive ventilatory support outcomes for patients with neuromuscular disease: a multicenter data collaboration

Background: Typically, patients with progressive neuromuscular disorders (NMDs) develop acute respiratory failure (ARF), are intubated, and when failing spontaneous breathing trials (SBTs) undergo a tracheotomy and receive tracheostomy mechanical ventilation (TMV). However, increasing numbers of pat...

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Autores principales:	M.R. Gonçalves, J.R. Bach, Y. Ishikawa, L. Saporito, J.C. Winck
Formato:	article
Lenguaje:	EN
Publicado:	Elsevier España 2021
Materias:	Noninvasive ventilation Neuromuscular disease Long term survival Diseases of the respiratory system RC705-779
Acceso en línea:	https://doaj.org/article/5bbf46ae550a47b0962451fda3caa4c8
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spelling	oai:doaj.org-article:5bbf46ae550a47b0962451fda3caa4c82021-11-06T04:34:18ZContinuous noninvasive ventilatory support outcomes for patients with neuromuscular disease: a multicenter data collaboration2531-043710.1016/j.pulmoe.2021.06.007https://doaj.org/article/5bbf46ae550a47b0962451fda3caa4c82021-11-01T00:00:00Zhttp://www.sciencedirect.com/science/article/pii/S2531043721001276https://doaj.org/toc/2531-0437Background: Typically, patients with progressive neuromuscular disorders (NMDs) develop acute respiratory failure (ARF), are intubated, and when failing spontaneous breathing trials (SBTs) undergo a tracheotomy and receive tracheostomy mechanical ventilation (TMV). However, increasing numbers of patients use nasal noninvasive ventilation (NIV), initially for sleep and this is extended to continuous dependence (CNVS). This can be used as a strategy to assist in successful extubation . We retrospectively reviewed 19 centers offering CNVS and mechanical insufflation-exsufflation (MI-E) as an alternative to TMV. Methods: Centers with publications or presentations concerning CNVS outcomes data were pooled for amyotrophic lateral sclerosis (ALS), Duchenne muscular dystrophy (DMD), and spinal muscular atrophy type 1 (SMA1). Progression to CNVS dependence without hospitalization, duration of dependence, and extubations and decannulations to CNVS were recorded. Prolongation of life was defined by duration of CNVS dependence without ventilator free breathing ability (VFBA). Results: There were 1623 part time (<23 h/day) NVS users with ALS, DMD, and SMA1 from 19 centers in 16 countries of whom 761 (47%) were CNVS dependent for 2218 patient-years. This included: 335 ALS patients for a mean 1.2 ± 1.0 (range to 8) years each; 385 DMD patients for 5.4 ± 1.6 (range to 29) years; and 41 SMA1 patients for 5.9 ± 1.8 (range to 20) years. Thirty-five DMD and ALS TMV users were decannulated to CNVS and MI-E. At data collection 494 (65%) patients were CNVS dependent but 110 (74 of whom with bulbar ALS), had undergone tracheotomies. Conclusions: ALS, DMD, and SMA1 patients can become CNVS dependent without requiring hospitalization but CNVS cannot be used indefinitely for many patients with advanced upper motor neuron diseases.M.R. GonçalvesJ.R. BachY. IshikawaL. SaporitoJ.C. WinckElsevier EspañaarticleNoninvasive ventilationNeuromuscular diseaseLong term survivalDiseases of the respiratory systemRC705-779ENPulmonology, Vol 27, Iss 6, Pp 509-517 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Noninvasive ventilation Neuromuscular disease Long term survival Diseases of the respiratory system RC705-779
spellingShingle	Noninvasive ventilation Neuromuscular disease Long term survival Diseases of the respiratory system RC705-779 M.R. Gonçalves J.R. Bach Y. Ishikawa L. Saporito J.C. Winck Continuous noninvasive ventilatory support outcomes for patients with neuromuscular disease: a multicenter data collaboration
description	Background: Typically, patients with progressive neuromuscular disorders (NMDs) develop acute respiratory failure (ARF), are intubated, and when failing spontaneous breathing trials (SBTs) undergo a tracheotomy and receive tracheostomy mechanical ventilation (TMV). However, increasing numbers of patients use nasal noninvasive ventilation (NIV), initially for sleep and this is extended to continuous dependence (CNVS). This can be used as a strategy to assist in successful extubation . We retrospectively reviewed 19 centers offering CNVS and mechanical insufflation-exsufflation (MI-E) as an alternative to TMV. Methods: Centers with publications or presentations concerning CNVS outcomes data were pooled for amyotrophic lateral sclerosis (ALS), Duchenne muscular dystrophy (DMD), and spinal muscular atrophy type 1 (SMA1). Progression to CNVS dependence without hospitalization, duration of dependence, and extubations and decannulations to CNVS were recorded. Prolongation of life was defined by duration of CNVS dependence without ventilator free breathing ability (VFBA). Results: There were 1623 part time (<23 h/day) NVS users with ALS, DMD, and SMA1 from 19 centers in 16 countries of whom 761 (47%) were CNVS dependent for 2218 patient-years. This included: 335 ALS patients for a mean 1.2 ± 1.0 (range to 8) years each; 385 DMD patients for 5.4 ± 1.6 (range to 29) years; and 41 SMA1 patients for 5.9 ± 1.8 (range to 20) years. Thirty-five DMD and ALS TMV users were decannulated to CNVS and MI-E. At data collection 494 (65%) patients were CNVS dependent but 110 (74 of whom with bulbar ALS), had undergone tracheotomies. Conclusions: ALS, DMD, and SMA1 patients can become CNVS dependent without requiring hospitalization but CNVS cannot be used indefinitely for many patients with advanced upper motor neuron diseases.
format	article
author	M.R. Gonçalves J.R. Bach Y. Ishikawa L. Saporito J.C. Winck
author_facet	M.R. Gonçalves J.R. Bach Y. Ishikawa L. Saporito J.C. Winck
author_sort	M.R. Gonçalves
title	Continuous noninvasive ventilatory support outcomes for patients with neuromuscular disease: a multicenter data collaboration
title_short	Continuous noninvasive ventilatory support outcomes for patients with neuromuscular disease: a multicenter data collaboration
title_full	Continuous noninvasive ventilatory support outcomes for patients with neuromuscular disease: a multicenter data collaboration
title_fullStr	Continuous noninvasive ventilatory support outcomes for patients with neuromuscular disease: a multicenter data collaboration
title_full_unstemmed	Continuous noninvasive ventilatory support outcomes for patients with neuromuscular disease: a multicenter data collaboration
title_sort	continuous noninvasive ventilatory support outcomes for patients with neuromuscular disease: a multicenter data collaboration
publisher	Elsevier España
publishDate	2021
url	https://doaj.org/article/5bbf46ae550a47b0962451fda3caa4c8
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Continuous noninvasive ventilatory support outcomes for patients with neuromuscular disease: a multicenter data collaboration

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