TY - JOUR
T1 - Telemedicine in Neuromuscular Diseases During Covid-19 Pandemic
T2 - ERN-NMD European Survey
AU - el-Hassar, Lynda
AU - Amara, Ahmed
AU - Sanson, Benoit
AU - Lacatus, Oana
AU - Amir Belhouchet, Ahmed
AU - Kroneman, Madelon
AU - Claeys, Kristl
AU - Plançon, Jean Philippe
AU - Rodolico, Carmelo
AU - Primiano, Guido
AU - Trojsi, Francesca
AU - Filosto, Massimiliano
AU - Mongini, Tiziana Enrica
AU - Bortolani, Sara
AU - Monforte, Mauro
AU - Carraro, Elena
AU - Maggi, Lorenzo
AU - Ricci, Federica
AU - Silani, Vincenzo
AU - Orsucci, Daniele
AU - Créange, Alain
AU - Péréon, Yann
AU - Stojkovic, Tanya
AU - van der Beek, Nadine Anna Maria Elisabeth
AU - Toscano, Antonio
AU - Pareyson, Davide
AU - Attarian, Shahram
AU - van den Bergh, Peter Y. K.
AU - Remiche, Gauthier
AU - Hoeijmakers, Janneke G. J.
AU - Badrising, Umesh
AU - Voermans, Nicol C.
AU - Kaindl, Angela M.
AU - Schara-Schmidt, Ulrike
AU - Schoser, Benedikt
AU - Gazzerro, Elisabetta
AU - Haberlová, Jana
AU - Voháňka, Stanislav
AU - Pál, Endre
AU - Molnar, Maria Judit
AU - Leonardis, Lea
AU - Tournev, Ivailo L.
AU - Osorio, Andrés Nascimento
AU - Olivé, Montse
AU - Muelas, Nuria
AU - Alonso-Perez, Jorge
AU - Plá, Francesc
AU - de Visser, Marianne
AU - Siciliano, Gabriele
AU - Sacconi, Sabrina
N1 - Publisher Copyright: © 2023 - IOS Press. All rights reserved.
PY - 2023
Y1 - 2023
N2 - 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.
AB - 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.
KW - Covid-19
KW - Europe
KW - Telemedicine
KW - neuromuscular diseases
UR - http://www.scopus.com/inward/record.url?scp=85150079762&partnerID=8YFLogxK
U2 - https://doi.org/10.3233/JND-221525
DO - https://doi.org/10.3233/JND-221525
M3 - Article
C2 - 36373291
SN - 2214-3599
VL - 10
SP - 173
EP - 184
JO - Journal of Neuromuscular Diseases
JF - Journal of Neuromuscular Diseases
IS - 2
ER -