Estimating the impact of COVID-19 pandemic on services provided by Italian Neuromuscular Centers: an Italian Association of Myology survey of the acute phase

Eleonora Mauri, Elena Abati, Olimpia Musumeci, Carmelo Rodolico, Maria Grazia D’Angelo, Massimiliano Mirabella, Matteo Lucchini, Luca Bello, Elena Pegoraro, Lorenzo Maggi, Letizia Manneschi, Chiara Gemelli, Marina Grandis, Angela Zuppa, Sara Massucco, Luana Benedetti, Claudia Caponnetto, Angelo Schenone, Alessandro Prelle, Stefano C. Previtali, Marina Scarlato, Adele D’Amico, Enrico Bertini, Elena M. Pennisi, Laura De Giglio, Marika Pane, Eugenio Mercuri, Tiziana Mongini, Federica Ricci, Angela Berardinelli, Guja Astrea, Sara Lenzi, Roberta Battini, Giulia Ricci, Francesca Torri, Gabriele Siciliano, Filippo M. Santorelli, Alessandra Ariatti, Massimiliano Filosto, Luigia Passamano, Luisa Politano, Marianna Scutifero, Paola Tonin, Barbara Fossati, Chiara Panicucci, Claudio Bruno, Sabrina Ravaglia, Mauro Monforte, Giorgio Tasca, Enzo Ricci, Antonio Petrucci, Lucio Santoro, Lucia Ruggiero, Andrea Barp, Emilio Albamonte, Valeria Sansone, Delia Gagliardi, Gianluca Costamagna, Alessandra Govoni, Francesca Magri, Roberta Brusa, Daniele Velardo, Megi Meneri, Monica Sciacco, Stefania Corti, Nereo Bresolin, Isabella Moroni, Sonia Messina, Antonio Di Muzio, Vincenzo Nigro, Rocco Liguori, Giovanni Antonini, Antonio Toscano, Carlo Minetti, Giacomo Pietro Comi

Since February 2020, the outbreak of COVID-19 in Italy has forced the health care system to undergo profound rearrangements in its services and facilities, especially in the worst-hit areas in Northern Italy. In this setting, inpatient and outpatient services had to rethink and reorganize their activities to meet the needs of patients during the "lockdown". The Italian Association of Myology developed a survey to estimate the impact of these changes on patients affected by neuromuscular disorders and on specialized neuromuscular centers during the acute phase of COVID-19 pandemic. We developed an electronic survey that was sent to neuromuscular centers affiliated with the Italian Association of Myology, assessing changes in pharmacological therapies provision, outpatient clinical and instrumental services, support services (physiotherapy, nursing care, psychological support) and clinical trials. 40% of surveyed neuromuscular centers reported a reduction in outpatient visit and examinations (44.5% of centers in Northern regions; 25% of centers in Central regions; 50% of centers in Southern regions). Twenty-two% of centers postponed in-hospital administration of therapies for neuromuscular diseases (23.4% in Northern regions; 13.0% in Central regions; 20% in Southern regions). Diagnostic and support services (physiotherapy, nursing care, psychological support) were suspended in 57% of centers (66/43/44% in Northern, Central and Southern centers respectively) Overall, the most affected services were rehabilitative services and on-site outpatient visits, which were suspended in 93% of centers. Strategies adopted by neuromuscular centers to overcome these changes included maintaining urgent on-site visits, addressing patients to available services and promoting remote contact and telemedicine. Overall, COVID-19 pandemic resulted in a significant disruption of clinical and support services for patients with neuromuscular diseases. Despite the efforts to provide telemedicine consults to patients, this option could be promoted and improved further. A close collaboration between the different neuromuscular centers and service providers as well as further implementation of telehealth platforms are necessary to ensure quality care to NMD patients in the near future and in case of recurrent pandemic waves.