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Article Dans Une Revue Neuromuscular Disorders Année : 2022

Long term noninvasive ventilation and continuous positive airway pressure in children with neuromuscular diseases in France

1 Hôpital Necker - Enfants Malades [AP-HP]
2 CHU-Liège - Centre Hospitalier Universitaire de Liège
3 VIFASOM (URP_7330) - Sommeil-Vigilance-Fatigue et Santé Publique
4 ASV Santé [Gennevilliers]
5 HFME - Hôpital Femme Mère Enfant [CHU - HCL]
6 CHU Trousseau [APHP]
7 CRSA - Centre de Recherche Saint-Antoine
8 Urgences pédiatriques [Hôpital de la Timone - APHM]
9 Service d’Anatomie Pathologique [CHRU Nancy]
10 DevAH - Développement, Adaptation et Handicap
11 CHRU Nancy - Centre Hospitalier Régional Universitaire de Nancy
12 Hôpital Jeanne de Flandre [Lille]
13 Hôpital Raymond Poincaré (Garches) [GHU AP-HP Université Paris-Saclay]
14 Service Anesthésie - Hôpital des enfants [CHU Toulouse]
15 SSR André Bousquairol [Villeneuve-Tolosane]
16 CHU Amiens-Picardie
17 CHUGA - Centre Hospitalier Universitaire [CHU Grenoble]
18 Hôpital Pellegrin
19 PhyMedExp - Physiologie & médecine expérimentale du Cœur et des Muscles [U 1046]
20 CHRU Montpellier - Centre Hospitalier Régional Universitaire [Montpellier]
21 Département Pédiatrie [CHRU Montpellier]
22 Hôpital Charles Nicolle [Rouen]
23 Centre Hospitalier Universitaire de Rennes [CHU Rennes] = Rennes University Hospital [Ponchaillou]
24 American Memorial Hospital (Reims)
25 Hôpital Robert Debré Paris
26 NeuroDiderot (UMR_S_1141 / U1141) - Maladies neurodéveloppementales et neurovasculaires
27 Service de Pédiatrie médicale [CHU Limoges]
28 Service de Pédiatrie Médicale [Caen]
29 Centre hospitalier Félix-Guyon [Saint-Denis, La Réunion]
30 CHU Sud Saint Pierre [Ile de la Réunion]
31 Asfa - Hôpital d'enfants Saint-Denis (La Réunion)
32 CHU-Lenval - Hôpitaux Pédiatriques de Nice Lenval
33 ESEAN - Etablissement de santé pour enfants et adolescents de la région Nantaise
34 CHU BREST Pédiatrie - CHRU de Brest - Département de Pédiatrie
35 CHU Strasbourg - Centre Hospitalier Universitaire [Strasbourg]
36 CHU Angers - Centre Hospitalier Universitaire d'Angers
37 Service de Pédiatrie Générale [CHU Clermont-Ferrand]
38 HCL - Hospices Civils de Lyon
39 UMRS 1158 - Neurophysiologie Respiratoire Expérimentale et Clinique
40 Département des urgences pédiatriques [CHU Necker]
Laurianne Coutier

Résumé

The aim of the study was to describe the characteristics of children with neuromuscular diseases treated with long term noninvasive ventilation or continuous positive airway pressure in France. On June 1st 2019, 387 patients (63% boys, mean age 11.2 ± 5.5 years) were treated with long term noninvasive ventilation/continuous positive airway pressure. Thirty three percent of patients had spinal muscular atrophy, 30% congenital myopathy/dystrophy, 20% Duchenne muscular dystrophy, 7% Steinert myotonic dystrophy, and 9% other neuromuscular diseases. Ninety-four percent of patients were treated with long term noninvasive ventilation and 6% with continuous positive airway pressure. Treatment was initiated electively for 85% of patients, mainly on an abnormal overnight gas exchange recording (38% of patients). Noninvasive ventilation/continuous positive airway pressure was initiated during a respiratory exacerbation in 15% of patients. Mean duration of noninvasive ventilation/continuous positive airway pressure was 3.3 ± 3.1 years. Mean objective long term noninvasive ventilation/continuous positive airway pressure use was 8.0 ± 3.1 h/24. Spinal muscular atrophy, congenital myopathy/dystrophy, and Duchenne muscular dystrophy represented 83% of children with neuromuscular diseases treated with long term noninvasive ventilation in France. Screening for nocturnal hypoventilation was satisfactory as noninvasive ventilation /continuous positive airway pressure was predominantly initiated electively.
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Dates et versions

hal-03792014 , version 1 (31-10-2022)

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Laura Allaer, Sonia Khirani, Lucie Griffon, Bruno Massenavette, Priscille Bierme, et al.. Long term noninvasive ventilation and continuous positive airway pressure in children with neuromuscular diseases in France. Neuromuscular Disorders, 2022, 32 (11-12), pp.886-892. ⟨10.1016/j.nmd.2022.09.008⟩. ⟨hal-03792014⟩
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