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Telemedicine in Neuromuscular Diseases During Covid-19 Pandemic: ERN-NMD European Survey.
El-Hassar, Lynda; Amara, Ahmed; Sanson, Benoit; Lacatus, Oana; Amir Belhouchet, Ahmed; Kroneman, Madelon; Claeys, Kristl; Plançon, Jean Philippe; Rodolico, Carmelo; Primiano, Guido; Trojsi, Francesca; Filosto, Massimiliano; Mongini, Tiziana Enrica; Bortolani, Sara; Monforte, Mauro; Carraro, Elena; Maggi, Lorenzo; Ricci, Federica; Silani, Vincenzo; Orsucci, Daniele; Créange, Alain; Péréon, Yann; Stojkovic, Tanya; van der Beek, Nadine Anna Maria Elisabeth; Toscano, Antonio; Pareyson, Davide; Attarian, Shahram; Van den Bergh, Peter Y K; Remiche, Gauthier; Hoeijmakers, Janneke G J; Badrising, Umesh; Voermans, Nicol C; Kaindl, Angela M; Schara-Schmidt, Ulrike; Schoser, Benedikt; Gazzerro, Elisabetta; Haberlová, Jana; Vohánka, Stanislav; Pál, Endre; Molnar, Maria Judit; Leonardis, Lea; Tournev, Ivailo L; Osorio, Andrés Nascimento; Olivé, Montse; Muelas, Nuria; Alonso-Perez, Jorge; de Visser, Marianne; Siciliano, Gabriele; Sacconi, Sabrina.
  • El-Hassar L; Peripheral Nervous System and Muscle Department, Rare Neuromuscular Disease Reference Center, University Hospital Center of Nice, Nice, France.
  • Amara A; Peripheral Nervous System and Muscle Department, Rare Neuromuscular Disease Reference Center, University Hospital Center of Nice, Nice, France.
  • Sanson B; Peripheral Nervous System and Muscle Department, Rare Neuromuscular Disease Reference Center, University Hospital Center of Nice, Nice, France.
  • Lacatus O; Peripheral Nervous System and Muscle Department, Rare Neuromuscular Disease Reference Center, University Hospital Center of Nice, Nice, France.
  • Amir Belhouchet A; Neurology Department, Bucharest University and Emergency Hospital, Bucharest, Romania.
  • Kroneman M; Peripheral Nervous System and Muscle Department, Rare Neuromuscular Disease Reference Center, University Hospital Center of Nice, Nice, France.
  • Claeys K; Netherlands Institute for Health Services Research (NIVEL), Utrecht, The Netherlands.
  • Plançon JP; Department of Neurology, University Hospitals Leuven, and Laboratory for Muscle Diseases and Neuropathies, Department of Neurosciences, KU Leuven, Leuven, Belgium.
  • Rodolico C; European Patient Organisation for Dysimmune and Inflammatory Neuropathies (EPODIN) and EURO-NMD Educational board, Paris, France.
  • Primiano G; Centro di Riferimento Regionale perla Ricerca, Neurology and Neuromuscular Diseases Unit, Italy.
  • Trojsi F; Fondazione Policlinico Universitario- IRCCS, Rome, Italy.
  • Filosto M; First Division of Neurology, Department of Advanced Medical and Surgical Sciences, Università degli Studidella Campania Luigi Vanvitelli Scuola di Medicina e Chirurgia, Napoli, Campania, Italy.
  • Mongini TE; Department of Neurological Sciences and Vision, ASST "Spedali Civili", Brescia, Italy.
  • Bortolani S; Neuromuscular Center, Azienda Ospedaliera Universitaria Città della Salute e della Scienza di Torino, University of Turin, Turin, Italy.
  • Monforte M; Department of Neurosciences Rita Levi Montalcini, Neuromuscular Center, University of Torino, Turin, Italy.
  • Carraro E; Unità Operativa Complessa di Neurologia, Fondazione Policlinico Universitario A. Gemelli IRCCS, Largo A. Gemelli, Rome, Italy.
  • Maggi L; Neuromuscular Omnicentre, Fondazione Serena Onlus, Milan, Italy.
  • Ricci F; Neuroimmunology and Neuromuscular Disease Unit, Foundation IRCCS Carlo Besta, Neurological Institute, Milan, Italy.
  • Silani V; Department of Public Health and Pediatric Sciences, Section of Child and Adolescent Neuropsychiatry, University of Turin, Turin, Italy.
  • Orsucci D; Department of Neurology and Laboratory of Neuroscience, Istituto Auxologico Italiano, IRCCS, Milan, Italy.
  • Créange A; Unit of Neurology, San Luca Hospital, Via Lippi-Francesconi, Lucca, Italy.
  • Péréon Y; Neurology Department, CHU Henri Mondor, APHP, UPEC, Créteil, France.
  • Stojkovic T; Centre de Référence Maladies Neuromusculaires Atlantique-Occitanie-Caraïbes, Hôpital Hôtel-Dieu, Nantes, France.
  • van der Beek NAME; Institut de Myologie, Centre de Référence de Pathologie Neuromusculaire Paris-Est, AP-HP, Pitié Salpêtrière University Hospital, Sorbonne University, Paris, France.
  • Toscano A; Department of Neurology, Erasmus MC University Medical Center, Rotterdam, The Netherlands.
  • Pareyson D; Department of Clinical and Experimental Medicine, Reference Centre for Rare Neuromuscular Disorders, University of Messina, Messina, Italy.
  • Attarian S; Unit of Rare Neurodegenerative and Neurometabolic Diseases, Department of Clinical Neurosciences, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy.
  • Van den Bergh PYK; Centre de Référence des Maladies Neuromusculaires et de la SLA, APHM, CHU Timone, Marseille, France.
  • Remiche G; Department of Neurology, Neuromuscular Reference Centre, University Hospital Saint-Luc, Brussels, Belgium.
  • Hoeijmakers JGJ; Department of Neurology, Centre de Référence Neuromusculaire, Hôpital Erasme, Université Libre de Bruxelles, Brussels, Belgium.
  • Badrising U; Department of Neurology, Maastricht University Medical Center +, Maastricht, The Netherlands.
  • Voermans NC; Department of Neurology, Leiden University Medical Centre, Leiden, The Netherlands.
  • Kaindl AM; Department of Neurology, Radboud University Medical Centre, GA Nijmegen, The Netherlands.
  • Schara-Schmidt U; Department of Pediatric Neurology, Charité-Universitätsmedizin Berlin, Berlin, Germany.
  • Schoser B; Clinic for Pediatrics I, Pediatric Neurology, University Hospital Essen, Essen, Germany.
  • Gazzerro E; Department of Neurology Klinikum München, Friedrich-Baur-Institut, München, Germany.
  • Haberlová J; Muscle Research Unit, Experimental and Clinical Research Center, Charit, Germany.
  • Vohánka S; Department of Pediatric Neurology, Motol University Hospital, Prague, Czech Republic.
  • Pál E; Department of Neurology, University Hospital Brno, Brno, Czech Republic.
  • Molnar MJ; Department of Neurology, University of Pécs, Pécs, Hungary.
  • Leonardis L; Institute of Genomic Medicine and Rare Disorders, Semmelweis University, Budapest, Hungary.
  • Tournev IL; Institute of Clinical Neurophysiology, University Medical Centre Ljubljana, Ljubljana, Slovenia.
  • Osorio AN; Department of Neurology, Clinic of Nervous Diseases, University Hospital Aleksandrovska, Medical University, Sofia, Bulgaria.
  • Olivé M; Neuromuscular Unit, Neuropaediatrics Department, Institut de Recerca Hospital Universitari Sant Joan de Déu, ISCIII, CIBERER, Barcelona, Spain.
  • Muelas N; Department of Neurology, Neuromuscular Disorders Unit, Hospital de la Santa Creu i Sant Pau, Barcelona, Spain.
  • Alonso-Perez J; Department of Neurology, Neuromuscular Diseases Unit, Hospital Universitari i Politècnic La Fe, Valencia, Spain.
  • de Visser M; Neuromuscular Unit, Neurology Department, Hospital de Sant Pau, IIB Sant Pau, Barcelona, Spain.
  • Siciliano G; Amsterdam University Medical Centres, Academic Medical Centre, Amsterdam, The Netherlands.
  • Sacconi S; Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy.
J Neuromuscul Dis ; 2022 Nov 11.
Article in English | MEDLINE | ID: covidwho-2258060
ABSTRACT

BACKGROUND:

Telemedicine (TM) contributes to bridge the gap between healthcare facilities and patients' homes with neuromuscular disease (NMD) because of mobility issues. However, its deployment is limited due to difficulties evaluating subtle neurological signs such as mild weakness or sensory deficits. The COVID-19 pandemic has disrupted healthcare delivery worldwide, necessitating rapid measures implementation by health care providers (HCPs) to protect patients from acquiring SARS-CoV-2 while maintaining the best care and treatment.

OBJECTIVES:

Given the challenges faced by remote healthcare assistance of NMD patients, we aim to evaluate the use of TM in NMD during the COVID-19 pandemic.

METHODS:

Based on the Model for Assessment-of-Telemedicine-Applications (MAST), we conducted a survey amongst clinicians of the ERN EURO NMD (European-Reference-Network-for-Rare-Neuromuscular-Diseases).

RESULTS:

Based on 42 responses over 76 expected ones, our results show that the COVID-19 pandemic significantly increased the number of HCPs using TM (from 60% to 100%). The TM types most used during the COVID-19 period are teleconsultation and consultation by phone, particularly in the context of symptoms worsening in NMD patients with COVID-19 infection. Most European HCPs were satisfied when using TM but as a complementary option to physical consultations. Many responses addressed the issue of technical aspects needing improvement, particularly for elderly patients who need caregivers' assistance for accessing the TM platform.

CONCLUSIONS:

TM has been essential during COVID-19, but its use still presents some limitations for NMD patients with cognitive deficits or for first-time diagnosis. Thus, TM should be used as complement to, rather than substitute, for face-to-face consultations.
Keywords

Full text: Available Collection: International databases Database: MEDLINE Type of study: Experimental Studies / Observational study / Qualitative research Language: English Year: 2022 Document Type: Article Affiliation country: JND-221525

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Full text: Available Collection: International databases Database: MEDLINE Type of study: Experimental Studies / Observational study / Qualitative research Language: English Year: 2022 Document Type: Article Affiliation country: JND-221525