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Guidance for the care of neuromuscular patients during the COVID-19 pandemic outbreak from the French Rare Health Care for Neuromuscular Diseases Network.

Identifieur interne : 001270 ( Main/Exploration ); précédent : 001269; suivant : 001271

Guidance for the care of neuromuscular patients during the COVID-19 pandemic outbreak from the French Rare Health Care for Neuromuscular Diseases Network.

Auteurs : G. Solé [France] ; E. Salort-Campana [France] ; Y. Pereon [France] ; T. Stojkovic [France] ; K. Wahbi [France] ; P. Cintas [France] ; D. Adams [France] ; P. Laforet [France] ; V. Tiffreau [France] ; I. Desguerre [France] ; L I Pisella [France] ; A. Molon [France] ; S. Attarian [France]

Source :

RBID : pubmed:32354651

Descripteurs français

English descriptors

Abstract

In France, the epidemic phase of COVID-19 caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) began in February 2020 and resulted in the implementation of emergency measures and a degradation in the organization of neuromuscular reference centers. In this special context, the French Rare Health Care for Neuromuscular Diseases Network (FILNEMUS) has established guidance in an attempt to homogenize the management of neuromuscular (NM) patients within the French territory. Hospitalization should be reserved for emergencies, the conduct of treatments that cannot be postponed, check-ups for which the diagnostic delay may result in a loss of survival chance, and cardiorespiratory assessments for which the delay could be detrimental to the patient. A national strategy was adopted during a period of 1 to 2months concerning treatments usually administered in hospitalization. NM patients treated with steroid/immunosuppressants for a dysimmune pathology should continue all of their treatments in the absence of any manifestations suggestive of COVID-19. A frequently asked questions (FAQ) sheet has been compiled and updated on the FILNEMUS website. Various support systems for self-rehabilitation and guided exercises have been also provided on the website. In the context of NM diseases, particular attention must be paid to two experimental COVID-19 treatments, hydroxycholoroquine and azithromycin: risk of exacerbation of myasthenia gravis and QT prolongation in patients with pre-existing cardiac involvement. The unfavorable emergency context related to COVID-19 may specially affect the potential for intensive care admission (ICU) for people with NMD. In order to preserve the fairest medical decision, a multidisciplinary working group has listed the neuromuscular diseases with a good prognosis, usually eligible for resuscitation admission in ICU and, for other NM conditions, the positive criteria suggesting a good prognosis. Adaptation of the use of noninvasive ventilation (NIV) make it possible to limit nebulization and continue using NIV in ventilator-dependent patients.

DOI: 10.1016/j.neurol.2020.04.004
PubMed: 32354651
PubMed Central: PMC7167585


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Le document en format XML

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<name sortKey="Pisella, L I" sort="Pisella, L I" uniqKey="Pisella L" first="L I" last="Pisella">L I Pisella</name>
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<term>Angiotensin Receptor Antagonists (therapeutic use)</term>
<term>Angiotensin-Converting Enzyme Inhibitors (therapeutic use)</term>
<term>Anti-Bacterial Agents (therapeutic use)</term>
<term>Antimalarials (therapeutic use)</term>
<term>Azithromycin (therapeutic use)</term>
<term>Betacoronavirus (MeSH)</term>
<term>COVID-19 (MeSH)</term>
<term>Cardiorespiratory Fitness (MeSH)</term>
<term>Coronavirus Infections (drug therapy)</term>
<term>Coronavirus Infections (epidemiology)</term>
<term>Emergency Treatment (MeSH)</term>
<term>France (epidemiology)</term>
<term>Glycogen Storage Disease Type II (therapy)</term>
<term>Hospitalization (MeSH)</term>
<term>Humans (MeSH)</term>
<term>Hydroxychloroquine (therapeutic use)</term>
<term>Immune System Diseases (therapy)</term>
<term>Immunoglobulins, Intravenous (therapeutic use)</term>
<term>Immunosuppressive Agents (therapeutic use)</term>
<term>Muscular Atrophy, Spinal (drug therapy)</term>
<term>Neuromuscular Diseases (therapy)</term>
<term>Oligonucleotides (therapeutic use)</term>
<term>Pandemics (MeSH)</term>
<term>Physical Therapy Modalities (MeSH)</term>
<term>Pneumonia, Viral (drug therapy)</term>
<term>Pneumonia, Viral (epidemiology)</term>
<term>Prognosis (MeSH)</term>
<term>RNA, Small Interfering (therapeutic use)</term>
<term>SARS-CoV-2 (MeSH)</term>
<term>Steroids (therapeutic use)</term>
<term>Withholding Treatment (MeSH)</term>
<term>alpha-Glucosidases (therapeutic use)</term>
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<keywords scheme="KwdFr" xml:lang="fr">
<term>Abstention thérapeutique (MeSH)</term>
<term>Amyotrophie spinale (traitement médicamenteux)</term>
<term>Antagonistes des récepteurs aux angiotensines (usage thérapeutique)</term>
<term>Antibactériens (usage thérapeutique)</term>
<term>Antipaludiques (usage thérapeutique)</term>
<term>Azithromycine (usage thérapeutique)</term>
<term>Betacoronavirus (MeSH)</term>
<term>Capacité cardiorespiratoire (MeSH)</term>
<term>France (épidémiologie)</term>
<term>Glycogénose de type II (thérapie)</term>
<term>Hospitalisation (MeSH)</term>
<term>Humains (MeSH)</term>
<term>Hydroxychloroquine (usage thérapeutique)</term>
<term>Immunoglobulines par voie veineuse (usage thérapeutique)</term>
<term>Immunosuppresseurs (usage thérapeutique)</term>
<term>Infections à coronavirus (traitement médicamenteux)</term>
<term>Infections à coronavirus (épidémiologie)</term>
<term>Inhibiteurs de l'enzyme de conversion de l'angiotensine (usage thérapeutique)</term>
<term>Maladies du système immunitaire (thérapie)</term>
<term>Maladies neuromusculaires (thérapie)</term>
<term>Oligonucléotides (usage thérapeutique)</term>
<term>Pandémies (MeSH)</term>
<term>Petit ARN interférent (usage thérapeutique)</term>
<term>Pneumopathie virale (traitement médicamenteux)</term>
<term>Pneumopathie virale (épidémiologie)</term>
<term>Pronostic (MeSH)</term>
<term>Stéroïdes (usage thérapeutique)</term>
<term>Techniques de physiothérapie (MeSH)</term>
<term>Traitement d'urgence (MeSH)</term>
<term>alpha-Glucosidase (usage thérapeutique)</term>
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<term>Angiotensin Receptor Antagonists</term>
<term>Angiotensin-Converting Enzyme Inhibitors</term>
<term>Anti-Bacterial Agents</term>
<term>Antimalarials</term>
<term>Azithromycin</term>
<term>Hydroxychloroquine</term>
<term>Immunoglobulins, Intravenous</term>
<term>Immunosuppressive Agents</term>
<term>Oligonucleotides</term>
<term>RNA, Small Interfering</term>
<term>Steroids</term>
<term>alpha-Glucosidases</term>
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<term>France</term>
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<term>Coronavirus Infections</term>
<term>Muscular Atrophy, Spinal</term>
<term>Pneumonia, Viral</term>
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<term>Coronavirus Infections</term>
<term>Pneumonia, Viral</term>
</keywords>
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<term>Glycogen Storage Disease Type II</term>
<term>Immune System Diseases</term>
<term>Neuromuscular Diseases</term>
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<term>Glycogénose de type II</term>
<term>Maladies du système immunitaire</term>
<term>Maladies neuromusculaires</term>
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<term>Amyotrophie spinale</term>
<term>Infections à coronavirus</term>
<term>Pneumopathie virale</term>
</keywords>
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<term>Antagonistes des récepteurs aux angiotensines</term>
<term>Antibactériens</term>
<term>Antipaludiques</term>
<term>Azithromycine</term>
<term>Hydroxychloroquine</term>
<term>Immunoglobulines par voie veineuse</term>
<term>Immunosuppresseurs</term>
<term>Inhibiteurs de l'enzyme de conversion de l'angiotensine</term>
<term>Oligonucléotides</term>
<term>Petit ARN interférent</term>
<term>Stéroïdes</term>
<term>alpha-Glucosidase</term>
</keywords>
<keywords scheme="MESH" qualifier="épidémiologie" xml:lang="fr">
<term>France</term>
<term>Infections à coronavirus</term>
<term>Pneumopathie virale</term>
</keywords>
<keywords scheme="MESH" xml:lang="en">
<term>Betacoronavirus</term>
<term>COVID-19</term>
<term>Cardiorespiratory Fitness</term>
<term>Emergency Treatment</term>
<term>Hospitalization</term>
<term>Humans</term>
<term>Pandemics</term>
<term>Physical Therapy Modalities</term>
<term>Prognosis</term>
<term>SARS-CoV-2</term>
<term>Withholding Treatment</term>
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<term>Abstention thérapeutique</term>
<term>Betacoronavirus</term>
<term>Capacité cardiorespiratoire</term>
<term>Hospitalisation</term>
<term>Humains</term>
<term>Pandémies</term>
<term>Pronostic</term>
<term>Techniques de physiothérapie</term>
<term>Traitement d'urgence</term>
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<term>France</term>
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<front>
<div type="abstract" xml:lang="en">In France, the epidemic phase of COVID-19 caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) began in February 2020 and resulted in the implementation of emergency measures and a degradation in the organization of neuromuscular reference centers. In this special context, the French Rare Health Care for Neuromuscular Diseases Network (FILNEMUS) has established guidance in an attempt to homogenize the management of neuromuscular (NM) patients within the French territory. Hospitalization should be reserved for emergencies, the conduct of treatments that cannot be postponed, check-ups for which the diagnostic delay may result in a loss of survival chance, and cardiorespiratory assessments for which the delay could be detrimental to the patient. A national strategy was adopted during a period of 1 to 2months concerning treatments usually administered in hospitalization. NM patients treated with steroid/immunosuppressants for a dysimmune pathology should continue all of their treatments in the absence of any manifestations suggestive of COVID-19. A frequently asked questions (FAQ) sheet has been compiled and updated on the FILNEMUS website. Various support systems for self-rehabilitation and guided exercises have been also provided on the website. In the context of NM diseases, particular attention must be paid to two experimental COVID-19 treatments, hydroxycholoroquine and azithromycin: risk of exacerbation of myasthenia gravis and QT prolongation in patients with pre-existing cardiac involvement. The unfavorable emergency context related to COVID-19 may specially affect the potential for intensive care admission (ICU) for people with NMD. In order to preserve the fairest medical decision, a multidisciplinary working group has listed the neuromuscular diseases with a good prognosis, usually eligible for resuscitation admission in ICU and, for other NM conditions, the positive criteria suggesting a good prognosis. Adaptation of the use of noninvasive ventilation (NIV) make it possible to limit nebulization and continue using NIV in ventilator-dependent patients.</div>
</front>
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<Year>2020</Year>
<Month>06</Month>
<Day>11</Day>
</DateCompleted>
<DateRevised>
<Year>2020</Year>
<Month>12</Month>
<Day>18</Day>
</DateRevised>
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<Journal>
<ISSN IssnType="Print">0035-3787</ISSN>
<JournalIssue CitedMedium="Internet">
<Volume>176</Volume>
<Issue>6</Issue>
<PubDate>
<Year>2020</Year>
<Month>Jun</Month>
</PubDate>
</JournalIssue>
<Title>Revue neurologique</Title>
<ISOAbbreviation>Rev Neurol (Paris)</ISOAbbreviation>
</Journal>
<ArticleTitle>Guidance for the care of neuromuscular patients during the COVID-19 pandemic outbreak from the French Rare Health Care for Neuromuscular Diseases Network.</ArticleTitle>
<Pagination>
<MedlinePgn>507-515</MedlinePgn>
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<ELocationID EIdType="doi" ValidYN="Y">10.1016/j.neurol.2020.04.004</ELocationID>
<Abstract>
<AbstractText>In France, the epidemic phase of COVID-19 caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) began in February 2020 and resulted in the implementation of emergency measures and a degradation in the organization of neuromuscular reference centers. In this special context, the French Rare Health Care for Neuromuscular Diseases Network (FILNEMUS) has established guidance in an attempt to homogenize the management of neuromuscular (NM) patients within the French territory. Hospitalization should be reserved for emergencies, the conduct of treatments that cannot be postponed, check-ups for which the diagnostic delay may result in a loss of survival chance, and cardiorespiratory assessments for which the delay could be detrimental to the patient. A national strategy was adopted during a period of 1 to 2months concerning treatments usually administered in hospitalization. NM patients treated with steroid/immunosuppressants for a dysimmune pathology should continue all of their treatments in the absence of any manifestations suggestive of COVID-19. A frequently asked questions (FAQ) sheet has been compiled and updated on the FILNEMUS website. Various support systems for self-rehabilitation and guided exercises have been also provided on the website. In the context of NM diseases, particular attention must be paid to two experimental COVID-19 treatments, hydroxycholoroquine and azithromycin: risk of exacerbation of myasthenia gravis and QT prolongation in patients with pre-existing cardiac involvement. The unfavorable emergency context related to COVID-19 may specially affect the potential for intensive care admission (ICU) for people with NMD. In order to preserve the fairest medical decision, a multidisciplinary working group has listed the neuromuscular diseases with a good prognosis, usually eligible for resuscitation admission in ICU and, for other NM conditions, the positive criteria suggesting a good prognosis. Adaptation of the use of noninvasive ventilation (NIV) make it possible to limit nebulization and continue using NIV in ventilator-dependent patients.</AbstractText>
<CopyrightInformation>Copyright © 2020 Elsevier Masson SAS. All rights reserved.</CopyrightInformation>
</Abstract>
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<Author ValidYN="Y">
<LastName>Solé</LastName>
<ForeName>G</ForeName>
<Initials>G</Initials>
<AffiliationInfo>
<Affiliation>Reference Center for Neuromuscular Disorders AOC, Department of Neurology, Nerve-Muscle Unit, CHU Bordeaux (Pellegrin University Hospital), place Amélie-Raba-Léon, 33076 Bordeaux, France.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y">
<LastName>Salort-Campana</LastName>
<ForeName>E</ForeName>
<Initials>E</Initials>
<AffiliationInfo>
<Affiliation>Reference Center of Neuromuscular disorders and ALS, Timone University Hospital, AP-HM, 13385 Marseille, France; Medical Genetics, Aix-Marseille Université, Inserm UMR_1251, 13005 Marseille, France.</Affiliation>
</AffiliationInfo>
</Author>
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<LastName>Pereon</LastName>
<ForeName>Y</ForeName>
<Initials>Y</Initials>
<AffiliationInfo>
<Affiliation>CHU Nantes, Reference Center for Neuromuscular Disorders AOC, Hôtel-Dieu, Nantes, France.</Affiliation>
</AffiliationInfo>
</Author>
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<LastName>Stojkovic</LastName>
<ForeName>T</ForeName>
<Initials>T</Initials>
<AffiliationInfo>
<Affiliation>Reference Center of Neuromuscular Disorders Nord/Est/Île-de-France, Sorbonne Université, AP-HP, Hôpital Pitié-Salpêtrière, Inserm UMR_S 974, Paris, France.</Affiliation>
</AffiliationInfo>
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<LastName>Wahbi</LastName>
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<Initials>K</Initials>
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<Affiliation>AP-HP, Cochin Hospital, Cardiology Department, FILNEMUS, Centre de Référence de Pathologie Neuromusculaire Nord/Est/Île-de-France, Paris-Descartes, Sorbonne Paris Cité University, 75006 Paris, France; INSERM Unit 970, Paris Cardiovascular Research Centre (PARCC), Paris, France.</Affiliation>
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<LastName>Cintas</LastName>
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<Initials>P</Initials>
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<Affiliation>Reference Center of Neuromuscular Disorders AOC, Toulouse, University Hospitals, 31000 Toulouse, France.</Affiliation>
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<LastName>Adams</LastName>
<ForeName>D</ForeName>
<Initials>D</Initials>
<AffiliationInfo>
<Affiliation>Department of Neurology, CHU Bicetre, Hôpitaux Universitaires Paris Sud, Paris, France.</Affiliation>
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<Affiliation>Nord/Est/Île-de-France Neuromuscular Reference Center, Neurology Department, Raymond-Poincaré Teaching Hospital, AP-HP, Garches, France; INSERM U1179, END-ICAP, Versailles-Saint-Quentin-en-Yvelines University, Université Paris Saclay, Montigny-le-Bretonneux, France.</Affiliation>
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</Author>
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<LastName>Tiffreau</LastName>
<ForeName>V</ForeName>
<Initials>V</Initials>
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<Affiliation>Reference Center of Neuromuscular Disorders Nord/Est/Île-de-France, Hôpital Pierre-Swynghedauw, CHU de Lille, EA 7369 URePSSS, 59000 Lille, France.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y">
<LastName>Desguerre</LastName>
<ForeName>I</ForeName>
<Initials>I</Initials>
<AffiliationInfo>
<Affiliation>Reference Center of Neuromuscular Disorders Nord/Est/Île-de-France, Pediatric Neurology Department, Necker-Enfants-Malades Hospital, AP-HP, Paris, France.</Affiliation>
</AffiliationInfo>
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<LastName>Pisella</LastName>
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<Initials>LI</Initials>
<AffiliationInfo>
<Affiliation>Filnemus, AP-HM, Marseille, France.</Affiliation>
</AffiliationInfo>
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<LastName>Molon</LastName>
<ForeName>A</ForeName>
<Initials>A</Initials>
<AffiliationInfo>
<Affiliation>Filnemus, AP-HM, Marseille, France.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y">
<LastName>Attarian</LastName>
<ForeName>S</ForeName>
<Initials>S</Initials>
<AffiliationInfo>
<Affiliation>Reference Center of Neuromuscular disorders and ALS, Timone University Hospital, AP-HM, 13385 Marseille, France; Medical Genetics, Aix-Marseille Université, Inserm UMR_1251, 13005 Marseille, France. Electronic address: Shahram.ATTARIAN@ap-hm.fr.</Affiliation>
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</Author>
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<CollectiveName>FILNEMUS COVID-19 study group</CollectiveName>
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<Year>2020</Year>
<Month>04</Month>
<Day>20</Day>
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