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Research ArticleOriginal Research

Long-Term Mechanical Ventilation Equipment for Neuromuscular Patients: Meeting the Expectations of Patients and Prescribers

Frédéric Lofaso, Hélène Prigent, Vincent Tiffreau, Nathalie Menoury, Michel Toussaint, Armelle Finet Monnier, Natalie Stremler, Christian Devaux, Karl Leroux, David Orlikowski, Cécile Mauri, Isabelle Pin, Sabrina Sacconi, Cécile Pereira, Jean-Louis Pépin and Brigitte Fauroux for the Association Française Contre les Myopathies research group
Respiratory Care January 2014, 59 (1) 97-106; DOI: https://doi.org/10.4187/respcare.02229
Frédéric Lofaso
Physiologie-Explorations Fonctionnelles, et Le Centre d'Investigation Clinique et d'Innovation Technologique Unité Mixte de Recherche 805, Hôpital Raymond Poincaré, Assistance Publique Hôpitaux de Paris, Garches, France.
Institut National de la Santé et de la Recherche Médicale U 955, Equipe Biomécanique Cellulaire et Respiratoire, Créteil, France.
MD PhD
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  • For correspondence: [email protected]
Hélène Prigent
Physiologie-Explorations Fonctionnelles, et Le Centre d'Investigation Clinique et d'Innovation Technologique Unité Mixte de Recherche 805, Hôpital Raymond Poincaré, Assistance Publique Hôpitaux de Paris, Garches, France.
MD PhD
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Vincent Tiffreau
Centre de Référence des Maladies Neuromusculaires, Centre Hospitalier Régional Universitaire, Lille, France.
MD
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Nathalie Menoury
Maison d'Accueil Spécialisée Yolaine de Kepper, Saint-Georges-sur-Loire, France.
MD
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Michel Toussaint
Centre for Home Mechanical Ventilation, Inkendaal Rehabilitation Hospital, Brussels, Belgium.
PT PhD
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Armelle Finet Monnier
Centre de Référence des Maladies Neuromusculaires, Centre Hospitalier Universitaire Timone, Assistance Publique Hôpitaux de Marseille, Marseille, France.
MD
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Natalie Stremler
Centre de Référence des Maladies Neuromusculaires, Centre Hospitalier Universitaire Timone, Assistance Publique Hôpitaux de Marseille, Marseille, France.
MD
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Christian Devaux
Département des Actions Médicales, Association Française Contre les Myopathies, Evry, France.
PT
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Karl Leroux
l'Association d'Entraide des Polios et Handicapés Assistance, Suresnes, France.
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David Orlikowski
Physiologie-Explorations Fonctionnelles, et Le Centre d'Investigation Clinique et d'Innovation Technologique Unité Mixte de Recherche 805, Hôpital Raymond Poincaré, Assistance Publique Hôpitaux de Paris, Garches, France.
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Cécile Mauri
l'Association Pour l'Insertion des Grands Handicapés Respiratoires Et Moteurs, St-Mathieu-de-Tréviers, France.
MD
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Isabelle Pin
Pôle Couple Enfants et Pôle Locomotion, Rééducation et Physiologie, Centre Hospitalier Universitaire de Grenoble, Grenoble, France.
MD
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Sabrina Sacconi
Centre de Référence Maladies Neuromusculaires/Sclérose Latérale Amyotrophique, Hôpital Archet 1, Centre Hospitalier Universitaire de Nice, Nice, France.
MD
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Cécile Pereira
Centre de Compétences-Pneumologie Maladie Neuromusculaire, Centre Hospitalier Universitaire de Nice, Nice, France.
MD
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Jean-Louis Pépin
Pôle Couple Enfants et Pôle Locomotion, Rééducation et Physiologie, Centre Hospitalier Universitaire de Grenoble, Grenoble, France.
Centre de Référence Maladies Neuromusculaires/Sclérose Latérale Amyotrophique, Hôpital Archet 1, Centre Hospitalier Universitaire de Nice, Nice, France.
Centre de Compétences-Pneumologie Maladie Neuromusculaire, Centre Hospitalier Universitaire de Nice, Nice, France.
Institut National de la Santé et de la Recherche Médicale U 1042, HP2 Laboratory, Université Joseph Fourier, Faculté de Médecine, Grenoble, France.
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Brigitte Fauroux
Centre de Référence des Maladies Respiratoires Rares, Pneumologie Pédiatrique et Institut National de la Santé et de la Recherche Médicale U 955, Université Pierre et Marie Curie-Paris 6, Assistance Publique Hôpitaux de Paris, Hôpital Armand Trousseau, Paris, France.
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    Fig. 1.

    Proportions of tracheotomized patients and prescribers prepared to use currently available solutions for improving speech in tracheotomized patients.

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    Fig. 2.

    Distribution of ventilation modes in patients on long-term nocturnal noninvasive ventilation (NIV), patients on day-and-night NIV, and tracheostomized patients.

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    Fig. 3.

    Ventilation modes used by the patients versus prescriber opinions, according to ventilation interface, in 3 diagnosis groups (only the most frequent conditions were taken into account): Duchenne muscular dystrophy with nocturnal noninvasive ventilation (NIV), night-and-day NIV, or night-and-day ventilation via tracheostomy; myotonic dystrophy with nocturnal NIV; and spinal muscular atrophy with invasive ventilation via tracheostomy.

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    Fig. 4.

    Percentage of patients who received noninvasive ventilation (NIV) via mouthpiece versus via other NIV interface, according to daily hours of NIV.

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Respiratory Care: 59 (1)
Respiratory Care
Vol. 59, Issue 1
1 Jan 2014
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Long-Term Mechanical Ventilation Equipment for Neuromuscular Patients: Meeting the Expectations of Patients and Prescribers
Frédéric Lofaso, Hélène Prigent, Vincent Tiffreau, Nathalie Menoury, Michel Toussaint, Armelle Finet Monnier, Natalie Stremler, Christian Devaux, Karl Leroux, David Orlikowski, Cécile Mauri, Isabelle Pin, Sabrina Sacconi, Cécile Pereira, Jean-Louis Pépin, Brigitte Fauroux
Respiratory Care Jan 2014, 59 (1) 97-106; DOI: 10.4187/respcare.02229

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Long-Term Mechanical Ventilation Equipment for Neuromuscular Patients: Meeting the Expectations of Patients and Prescribers
Frédéric Lofaso, Hélène Prigent, Vincent Tiffreau, Nathalie Menoury, Michel Toussaint, Armelle Finet Monnier, Natalie Stremler, Christian Devaux, Karl Leroux, David Orlikowski, Cécile Mauri, Isabelle Pin, Sabrina Sacconi, Cécile Pereira, Jean-Louis Pépin, Brigitte Fauroux
Respiratory Care Jan 2014, 59 (1) 97-106; DOI: 10.4187/respcare.02229
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Keywords

  • home care
  • masks
  • Mouthpieces
  • Myopathies
  • Patient-centered care
  • respiratory failure

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