How to define and enhance diagnostic and assistance pathways in neuromuscular diseases during the COVID-19 pandemic: the concept of network

Guja Astrea 1, Gemma Marinella 1,2, Caterina Agosto 3, Delia Gagliardi 4, Marina Grandis 5, Maria Giuliano 6, Luisa Politano 7

1 IRCCS Fondazione Stella Maris, Calambrone (PI), Italy; 2 Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy; 3 Paediatric Palliative Care, Pain Service, Department of Women’s and Children’s Health, University of Padua, Padua, Italy; 4 Dino Ferrari Centre, Department of Pathophysiology and Transplantation (DEPT), Neuroscience Section, University of Milan, Milan, Italy; IRCCS Foundation Ca’ Granda Ospedale Maggiore Policlinico, Neurology Unit, Milan, Italy; 5 Department of Neuroscience, Rehabilitation, Ophthalmology, Maternal and Child Health University of Genova; IRCSS San Martino, Genoa, Italy; 6 Regional President of SIMPe Campania (Italian Society of Pediatricians) and National Head of SIMPe for Rare and Chronic Diseases; 7 Cardiomyology and Medical Genetics, University of Campania, Naples, Italy

DOI 10.36185/2532-1900-060

The main consequence of the COVID-19 pandemic has been to increase the distance between patients and their doctors and to limit the opportunities to compare experiences and clinical cases in the medical community. Based on this, we adopted a strategy to create networks with the ambition to break down these distances and to unify the process of care and management.
Here we report the results and perspectives of our efforts and studies.
A summary of the presentations on the topic, held during the webinars organized for macro-areas by the Italian Association of Myology with the aim of raising awareness among “non-expert doctors” who deal with neuromuscular disorders in the era of COVID-19 was collected and here reported.
Although the macro-areas responded in different way to the problems of neuromuscular patients in the era of COVID-19, they all have tried to create a network between doctors and opportunity for education and information, with the secondary outcome to have shared process of care and management. Telemedicine, virtual meetings and the strengthening of national and international networks, through research projects, were the nodal and common points.
Due to their complexity, neuromuscular diseases had already taught clinicians the importance of multidisciplinary confrontation. COVID-19 has further strengthened the need to create links between clinicians and experts, even of different nationalities, in order to guarantee to patients the best possible care, but above all, access and continuity of care even in critical periods. Adequate answers have been given to these problems, though there is still a lot to improve.

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