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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 : 000B95 ( Pmc/Corpus ); précédent : 000B94; suivant : 000B96

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 ; E. Salort-Campana ; Y. Pereon ; T. Stojkovic ; K. Wahbi ; P. Cintas ; D. Adams ; P. Laforet ; V. Tiffreau ; I. Desguerre ; Li Pisella ; A. Molon ; S. Attarian

Source :

RBID : PMC:7167585

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 2 months 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.


Url:
DOI: 10.1016/j.neurol.2020.04.004
PubMed: NONE
PubMed Central: 7167585

Links to Exploration step

PMC:7167585

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<nlm:aff id="aff0055">INSERM U1179, END-ICAP, Versailles Saint-Quentin-en-Yvelines University, Université Paris Saclay, France</nlm:aff>
</affiliation>
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<name sortKey="Tiffreau, V" sort="Tiffreau, V" uniqKey="Tiffreau V" first="V" last="Tiffreau">V. Tiffreau</name>
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<name sortKey="Desguerre, I" sort="Desguerre, I" uniqKey="Desguerre I" first="I" last="Desguerre">I. Desguerre</name>
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<p>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 2 months 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.</p>
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</title-group>
<contrib-group>
<contrib contrib-type="author" id="aut0005">
<name>
<surname>Solé</surname>
<given-names>G</given-names>
</name>
<xref rid="aff0005" ref-type="aff">a</xref>
<xref rid="fn0005" ref-type="fn"></xref>
</contrib>
<contrib contrib-type="author" id="aut0010">
<name>
<surname>Salort-Campana</surname>
<given-names>E</given-names>
</name>
<xref rid="aff0010" ref-type="aff">b</xref>
<xref rid="aff0015" ref-type="aff">c</xref>
<xref rid="fn0005" ref-type="fn"></xref>
</contrib>
<contrib contrib-type="author" id="aut0015">
<name>
<surname>Pereon</surname>
<given-names>Y</given-names>
</name>
<xref rid="aff0020" ref-type="aff">d</xref>
<xref rid="fn0010" ref-type="fn"></xref>
</contrib>
<contrib contrib-type="author" id="aut0020">
<name>
<surname>Stojkovic</surname>
<given-names>T</given-names>
</name>
<xref rid="aff0025" ref-type="aff">e</xref>
<xref rid="fn0010" ref-type="fn"></xref>
</contrib>
<contrib contrib-type="author" id="aut0025">
<name>
<surname>Wahbi</surname>
<given-names>K</given-names>
</name>
<xref rid="aff0030" ref-type="aff">f</xref>
<xref rid="aff0035" ref-type="aff">g</xref>
<xref rid="fn0010" ref-type="fn"></xref>
</contrib>
<contrib contrib-type="author" id="aut0030">
<name>
<surname>Cintas</surname>
<given-names>P</given-names>
</name>
<xref rid="aff0040" ref-type="aff">h</xref>
<xref rid="fn0010" ref-type="fn"></xref>
</contrib>
<contrib contrib-type="author" id="aut0035">
<name>
<surname>Adams</surname>
<given-names>D</given-names>
</name>
<xref rid="aff0045" ref-type="aff">i</xref>
<xref rid="fn0010" ref-type="fn"></xref>
</contrib>
<contrib contrib-type="author" id="aut0040">
<name>
<surname>Laforet</surname>
<given-names>P</given-names>
</name>
<xref rid="aff0050" ref-type="aff">j</xref>
<xref rid="aff0055" ref-type="aff">k</xref>
<xref rid="fn0010" ref-type="fn"></xref>
</contrib>
<contrib contrib-type="author" id="aut0045">
<name>
<surname>Tiffreau</surname>
<given-names>V</given-names>
</name>
<xref rid="aff0060" ref-type="aff">l</xref>
<xref rid="fn0010" ref-type="fn"></xref>
</contrib>
<contrib contrib-type="author" id="aut0050">
<name>
<surname>Desguerre</surname>
<given-names>I</given-names>
</name>
<xref rid="aff0065" ref-type="aff">m</xref>
<xref rid="fn0010" ref-type="fn"></xref>
</contrib>
<contrib contrib-type="author" id="aut0055">
<name>
<surname>Pisella</surname>
<given-names>LI</given-names>
</name>
<xref rid="aff0070" ref-type="aff">n</xref>
</contrib>
<contrib contrib-type="author" id="aut0060">
<name>
<surname>Molon</surname>
<given-names>A</given-names>
</name>
<xref rid="aff0070" ref-type="aff">n</xref>
</contrib>
<contrib contrib-type="author" id="aut0065">
<name>
<surname>Attarian</surname>
<given-names>S</given-names>
</name>
<email>Shahram.ATTARIAN@ap-hm.fr</email>
<xref rid="aff0010" ref-type="aff">b</xref>
<xref rid="aff0015" ref-type="aff">c</xref>
<xref rid="cor0005" ref-type="corresp"></xref>
</contrib>
<contrib contrib-type="author">
<collab>FILNEMUS/CODVID-19 study group</collab>
</contrib>
<aff id="aff0005">
<label>a</label>
Reference Center for Neuromuscular Disorders AOC, Department of Neurology, Nerve-Muscle Unit, CHU Bordeaux (Pellegrin University Hospital), Place Amélie Raba-Léon, 33076, Bordeaux, France</aff>
<aff id="aff0010">
<label>b</label>
Reference Center of Neuromuscular disorders and ALS, Timone University Hospital, AP-HM, 13385, Marseille, France</aff>
<aff id="aff0015">
<label>c</label>
Medical Genetics, Aix Marseille Université-Inserm UMR_1251, 13005, Marseille, France</aff>
<aff id="aff0020">
<label>d</label>
CHU Nantes, Reference Center for Neuromuscular Disorders AOC, Hôtel-Dieu, Nantes, France</aff>
<aff id="aff0025">
<label>e</label>
Reference Center of Neuromuscular Disorders Nord/Est/Ile-de-France, Sorbonne Université, AP-HP, Hôpital Pitié-Salpêtrière, Inserm UMR_S 974, Paris, France</aff>
<aff id="aff0030">
<label>f</label>
APHP, Cochin Hospital, Cardiology Department, FILNEMUS, Centre de Référence de Pathologie Neuromusculaire Nord/Est/Ile de France, Paris-Descartes, Sorbonne Paris Cité University, 75006, Paris, France</aff>
<aff id="aff0035">
<label>g</label>
INSERM Unit 970, Paris Cardiovascular Research Centre (PARCC), Paris, France</aff>
<aff id="aff0040">
<label>h</label>
Reference Center of Neuromuscular Disorders AOC, Toulouse, University Hospitals, 31000, Toulouse, France</aff>
<aff id="aff0045">
<label>i</label>
Department of Neurology, CHU Bicetre, Hôpitaux Universitaires Paris Sud, France</aff>
<aff id="aff0050">
<label>j</label>
Nord/Est/Ile de France Neuromuscular Reference center, Neurology department, Raymond-Poincaré teaching hospital, Garches, AP-HP, France</aff>
<aff id="aff0055">
<label>k</label>
INSERM U1179, END-ICAP, Versailles Saint-Quentin-en-Yvelines University, Université Paris Saclay, France</aff>
<aff id="aff0060">
<label>l</label>
Reference Center of Neuromuscular Disorders Nord/Est/Ile-de-France, Hôpital Pierre Swynghedauw, CHU de Lille, F-59000 Lille, EA 7369 URePSSS, France</aff>
<aff id="aff0065">
<label>m</label>
Reference Center of Neuromuscular Disorders Nord/Est/Ile-de-France,l Pediatric Neurology Department, Necker-Enfants Malades Hospital, APHP, Paris, France</aff>
<aff id="aff0070">
<label>n</label>
Filnemus, AP-HM, Marseille, France</aff>
</contrib-group>
<author-notes>
<corresp id="cor0005">
<label></label>
Corresponding author. CHU La Timone 264, rue Saint Pierre, 13005, Marseille, France
<email>Shahram.ATTARIAN@ap-hm.fr</email>
</corresp>
<fn id="fn0005">
<label></label>
<p id="npar0005">These authors contributed equally to this work.</p>
</fn>
<fn id="fn0010">
<label></label>
<p id="npar0010">These authors contributed equally to this work.</p>
</fn>
</author-notes>
<pub-date pub-type="pmc-release">
<day>20</day>
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<year>2020</year>
</pub-date>
<pmc-comment> PMC Release delay is 0 months and 0 days and was based on .</pmc-comment>
<pub-date pub-type="epub">
<day>20</day>
<month>4</month>
<year>2020</year>
</pub-date>
<history>
<date date-type="received">
<day>16</day>
<month>4</month>
<year>2020</year>
</date>
<date date-type="rev-recd">
<day>16</day>
<month>4</month>
<year>2020</year>
</date>
</history>
<permissions>
<copyright-statement>© 2020 Elsevier Masson SAS. All rights reserved.</copyright-statement>
<copyright-year>2020</copyright-year>
<copyright-holder>Elsevier Masson SAS</copyright-holder>
<license>
<license-p>Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID-19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active.</license-p>
</license>
</permissions>
<abstract id="abs0005">
<p>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 2 months 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.</p>
</abstract>
<kwd-group id="kwd0005">
<title>Keywords</title>
<kwd>COVID-19</kwd>
<kwd>neuromuscular</kwd>
<kwd>treatment</kwd>
<kwd>management</kwd>
<kwd>guidelines</kwd>
</kwd-group>
</article-meta>
<notes>
<p id="m0005">FILNEMUS/CODVID-19 study group : JC Antoine, A Barrière, R Bellance, F Bouhour, F Boyer, C Bulteel, B Burucoa, C Cances, V Carre, B Chabrol, A Chiné, A Choumert,  L Deberge, C Delleci, F Duval, A Echaniz-Laguna, C Espil-Taris, A Finet-Monnier, B Fontaine, M Gainnier, M-C Gellez, V Laugel, F Lofaso, F Michel, V Milhe de Bovis, MD Morard, B Paternostre, M Porte, J Pouget, C Pradeau, H Prigent, A Nadaj-Paklesa, C Richez, J Ropars, T Schaeverbeke, S Segovia-Kueny, C Tard, P Thoumie, C Vuillerot,  F Zagnoli</p>
</notes>
</front>
</pmc>
</record>

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