Guidance for the care of neuromuscular patients during the COVID-19 pandemic outbreak from the French Rare Health Care for Neuromuscular Diseases Network - 08/06/20

Doi : 10.1016/j.neurol.2020.04.004

G. Solé ^a,^{^{1
These authors contributed equally to this work as first authors.}}, E. Salort-Campana ^b,^c,^{^{1
These authors contributed equally to this work as first authors.}}, Y. Pereon ^d,^{^{2
These authors contributed equally to this work as second authors.}}, T. Stojkovic ^e,^{^{2
These authors contributed equally to this work as second authors.}}, K. Wahbi ^f,^g,^{^{2
These authors contributed equally to this work as second authors.}}, P. Cintas ^h,^{^{2
These authors contributed equally to this work as second authors.}}, D. Adams ^i,^{^{2
These authors contributed equally to this work as second authors.}}, P. Laforet ^j,^k,^{^{2
These authors contributed equally to this work as second authors.}}, V. Tiffreau ^l,^{^{2
These authors contributed equally to this work as second authors.}}, I. Desguerre ^m,^{^{2
These authors contributed equally to this work as second authors.}}, L.I. Pisella ⁿ, A. Molon ⁿ, S. Attarian ^b,^c,⁎
the
FILNEMUS COVID-19 study group^{^³}
FILNEMUS/COVID-19 study group: J.C. 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, M.D. 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.
^a Reference Center for Neuromuscular Disorders AOC, Department of Neurology, Nerve-Muscle Unit, CHU Bordeaux (Pellegrin University Hospital), place Amélie-Raba-Léon, 33076 Bordeaux, France
^b Reference Center of Neuromuscular disorders and ALS, Timone University Hospital, AP–HM, 13385 Marseille, France
^c Medical Genetics, Aix-Marseille Université, Inserm UMR_1251, 13005 Marseille, France
^d CHU Nantes, Reference Center for Neuromuscular Disorders AOC, Hôtel-Dieu, Nantes, France
^e Reference Center of Neuromuscular Disorders Nord/Est/Île-de-France, Sorbonne Université, AP–HP, Hôpital Pitié-Salpêtrière, Inserm UMR_S 974, Paris, France
^f 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
^g INSERM Unit 970, Paris Cardiovascular Research Centre (PARCC), Paris, France
^h Reference Center of Neuromuscular Disorders AOC, Toulouse, University Hospitals, 31000 Toulouse, France
ⁱ Department of Neurology, CHU Bicetre, Hôpitaux Universitaires Paris Sud, Paris, France
^j Nord/Est/Île-de-France Neuromuscular Reference Center, Neurology Department, Raymond-Poincaré Teaching Hospital, AP–HP, Garches, France
^k INSERM U1179, END-ICAP, Versailles–Saint-Quentin-en-Yvelines University, Université Paris Saclay, Montigny-le-Bretonneux, France
^l Reference Center of Neuromuscular Disorders Nord/Est/Île-de-France, Hôpital Pierre-Swynghedauw, CHU de Lille, EA 7369 URePSSS, 59000 Lille, France
^m Reference Center of Neuromuscular Disorders Nord/Est/Île-de-France, Pediatric Neurology Department, Necker-Enfants–Malades Hospital, AP–HP, Paris, France
ⁿ Filnemus, AP–HM, Marseille, France

^⁎Corresponding author at: CHU La Timone, 264, rue Saint-Pierre, 13005 Marseille, France.CHU La Timone264, rue Saint-PierreMarseille13005France

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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.

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Keywords : COVID-19, Neuromuscular, Treatment, Management, Guidelines