Telemedicine in Neuromuscular Diseases During Covid-19 Pandemic: ERN-NMD European Survey
Por:
El-Hassar, L, Amara, A, Sanson, B, Lacatus, O, Belhouchet, AA, Kroneman, M, Claeys, K, Plancon, JP, Rodolico, C, Primiano, G, Trojsi, F, Filosto, M, Mongini, TE, Bortolani, S, Monforte, M, Carraro, E, Maggi, L, Ricci, F, Silani, V, Orsucci, D, Créange, A, Péréon, Y, Stojkovic, T, van der Beek, NAME, Toscano, A, Pareyson, D, Attarian, S, Van den Bergh, PYK, Remiche, G, Hoeijmakers, JGJ, Badrising, U, Voermans, NC, Kaindl, AM, Schara-Schmidt, U, Schoser, B, Gazzerro, E, Haberlová, J, Vohánka, S, Pál, E, Molnar, MJ, Leonardis, L, Tournev, IL, Nascimento-Osorio A, Olivé, M, Muelas, N, Alonso-Perez, J, Plá, F, de Visser, M, Siciliano, G and Sacconi, S
Publicada:
1 ene 2023
Resumen:
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 usingTM(from 60% to 100%). TheTMtypes most used during theCOVID-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 usingTMbut 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, TMshould be used as complement to, rather than substitute, for face-to-face consultations.
Filiaciones:
El-Hassar, L:
Univ Hosp Ctr Nice, Rare Neuromuscular Dis Reference Ctr, Peripheral Nervous Syst & Muscle Dept, Nice, France
Amara, A:
Univ Hosp Ctr Nice, Rare Neuromuscular Dis Reference Ctr, Peripheral Nervous Syst & Muscle Dept, Nice, France
Sanson, B:
Univ Hosp Ctr Nice, Rare Neuromuscular Dis Reference Ctr, Peripheral Nervous Syst & Muscle Dept, Nice, France
Lacatus, O:
Univ Hosp Ctr Nice, Rare Neuromuscular Dis Reference Ctr, Peripheral Nervous Syst & Muscle Dept, Nice, France
Bucharest Univ, Neurol Dept, Bucharest, Romania
Emergency Hosp, Bucharest, Romania
Belhouchet, AA:
Univ Hosp Ctr Nice, Rare Neuromuscular Dis Reference Ctr, Peripheral Nervous Syst & Muscle Dept, Nice, France
Kroneman, M:
Netherlands Inst Hlth Serv Res NIVEL, Utrecht, Netherlands
Claeys, K:
Univ Hosp Leuven, Dept Neurol, Leuven, Belgium
Katholieke Univ Leuven, Lab Muscle Dis & Neuropathies, Dept Neurosci, Leuven, Belgium
Plancon, JP:
European Patient Org Dysimmune & Inflammatory Neu, Paris, France
EURO NMD Educ Board, Paris, France
Rodolico, C:
Ctr Riferimento Reg Perla Ric, Neurol & Neuromuscular Dis Unit, Aviano, Italy
Primiano, G:
Fdn Policlin Univ Agostino Gemelli IRCCS, Rome, Italy
Trojsi, F:
Univ Campania Luigi Vanvitelli, Dept Adv Med & Surg Sci, Div Neurol 1, Scuola Med & Chirurg Napoli, Campania, Italy
Filosto, M:
ASST SpedaliCivili, Clin Ctr NEMO Brescia Neuromuscular Dis, Brescia, Italy
Univ Brescia, Brescia, Italy
Mongini, TE:
Univ Turin, Azienda Osped Univ Citta Salute & Sci Torino, Neuromuscular Ctr, Turin, Italy
Bortolani, S:
Univ Torino, Neuromuscular Ctr, Dept Neurosci Rita Levi Montalcini, Turin, Italy
Monforte, M:
Fdn Policlin Univ A Gemelli IRCCS, Unita Operat Complessa Neurol, Rome, Italy
Carraro, E:
Fdn Serena Onlus, Neuromuscular Omnictr, Milan, Italy
Maggi, L:
Fdn IRCCS Carlo Besta, Neurol Inst, Neuroimmunol & Neuromuscular Dis Unit, Milan, Italy
Ricci, F:
Univ Turin, Dept Publ Hlth & Pediat Sci, Sect Child & Adolescent Neuropsychiat, Turin, Italy
Silani, V:
IRCCS, Dept Neurol, Ist Auxol Italiano, Milan, Italy
IRCCS, Lab Neurosci, Ist Auxol Italiano, Milan, Italy
Orsucci, D:
San Luca Hosp, Unit Neurol, Via Lippi Francesconi, Lucca, Italy
Créange, A:
UPEC, CHU Henri Mondor, AP HP, Neurol Dept, Creteil, France
Péréon, Y:
Hop Hotel Dieu, Ctr Reference Malad Neuromusculaires Atlantique O, Nantes, France
Stojkovic, T:
Sorbonne Univ, Pitie Salpetriere Univ Hosp, AP HP, Inst Myol,Ctr Reference Pathol Neuromusculaire Pa, Paris, France
van der Beek, NAME:
Erasmus MC Univ Med Ctr, Dept Neurol, Rotterdam, Netherlands
Toscano, A:
Univ Messina, Reference Ctr Rare Neuromuscular Disorders, Dept Clin & Expt Med, Messina, Italy
Pareyson, D:
Fdn IRCCS Ist Neurol Carlo Besta, Dept Clin Neurosci, Unit Rare Neurodegenerat & Neurometab Dis, Milan, Italy
Attarian, S:
CHU Timone, AP HM, Ctr Reference Malad Neuromusculaires & SLA, Marseille, France
Van den Bergh, PYK:
Univ Hosp St Luc, Dept Neurol, Neuromuscular Reference Ctr, Brussels, Belgium
Remiche, G:
Univ Libre Bruxelles, Ctr Reference Neuromusculaire, Dept Neurol, Hop Erasme, Brussels, Belgium
Hoeijmakers, JGJ:
Maastricht Univ, Dept Neurol, Med Ctr, Maastricht, Netherlands
Badrising, U:
Leiden Univ, Dept Neurol, Med Ctr, Leiden, Netherlands
Voermans, NC:
Radboud Univ Nijmegen, Dept Neurol, Med Ctr, Ga Nijmegen, Netherlands
Kaindl, AM:
Charite Univ Med Berlin, Dept Pediat Neurol, Berlin, Germany
Schara-Schmidt, U:
Univ Hosp Essen, Pediat Neurol, Clin Pediat 1, Essen, Germany
Schoser, B:
Friedrich Baur Inst, Dept Neurol, Klinikum Munchen, Munich, Germany
Gazzerro, E:
Expt & Clin Res Ctr, Muscle Res Unit, Charit, Germany
Haberlová, J:
Motol Univ Hosp, Dept Pediat Neurol, Prague, Czech Republic
Vohánka, S:
Univ Hosp Brno, Dept Neurol, Brno, Czech Republic
Pál, E:
Univ Pecs, Dept Neurol, Pecs, Hungary
Molnar, MJ:
Semmelweis Univ, Inst Genom Med & Rare Disorders, Budapest, Hungary
Leonardis, L:
Univ Med Ctr Ljubljana, Inst Clin Neurophysiol, Ljubljana, Slovenia
Tournev, IL:
Med Univ, Univ Hosp Aleksandrovska, Dept Neurol, Clin Nervous Dis, Sofia, Bulgaria
Nascimento-Osorio A:
Inst Recerca Hosp Univ St Joan Deu, Neuromuscular Unit, Neuropaediat Dept, CIBERER,ISCIII, Barcelona, Spain
Olivé, M:
Hosp Santa Creu & Sant Pau, Neuromuscular Dis Unit, Dept Neurol, Inst Invest Biomed St Pau IIB ST PAU, Barcelona, Spain
Muelas, N:
Hosp Univ & Politecn La Fe, Dept Neurol, Neuromuscular Dis Unit, Valencia, Spain
Alonso-Perez, J:
Hosp Santa Creu & Sant Pau, Neuromuscular Unit, IIB St Pau, Neurol Dept, Barcelona, Spain
Plá, F:
Hosp Santa Creu & Sant Pau, Neuromuscular Dis Unit, Dept Neurol, Inst Invest Biomed St Pau IIB ST PAU, Barcelona, Spain
de Visser, M:
Amsterdam Univ Med Ctr, Acad Med Ctr, Amsterdam, Netherlands
Siciliano, G:
Univ Pisa, Dept Clin & Expt Med, Pisa, Italy
Sacconi, S:
Univ Hosp Ctr Nice, Rare Neuromuscular Dis Reference Ctr, Peripheral Nervous Syst & Muscle Dept, Nice, France
Green Submitted, Green Published
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