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. 2022 Dec 31;41(4):135-177.
doi: 10.36185/2532-1900-081. eCollection 2022.

Emergencies cards for neuromuscular disorders 1st Consensus Meeting from UILDM - Italian Muscular Dystrophy Association Workshop report

Fabrizio Racca  1 , Valeria A Sansone  2 , Federica Ricci  3 , Massimiliano Filosto  4 , Stefania Pedroni  5 , Elena Mazzone  6 , Yaroslava Longhitano  1 , Christian Zanza  1 , Anna Ardissone  7 , Rachele Adorisio  8 , Angela Berardinelli  9 , Claudia Bondone  10 , Chiara Briani  11 , Francesca Cairello  12 , Elena Carraro  5 , Giacomo P Comi  13 , Grazia Crescimanno  14 , Adele D'Amico  15 , Fabio Deiaco  16 , Alessia Fabiano  17 , Francesco Franceschi  18 , Michelangelo Mancuso  19 , Alessandro Massè  20 , Sonia Messina  21 , Tiziana Mongini  22 , Isabella Moroni  7 , Andrea Moscatelli  23 , Olimpia Musumeci  21 , Paolo Navalesi  24 , Gerardo Nigro  25 , Carlo Origo  26 , Chiara Panicucci  27 , Marika Pane  6 , Martino Pavone  28 , Marina Pedemonte  29 , Elena Pegoraro  11 , Marco Piastra  30 , Antonella Pini  31 , Luisa Politano  32 , Stefano Previtali  33 , Fabrizio Rao  34 , Giulia Ricci  19 , Antonio Toscano  21 , Andrea Wolfler  23 , Khristian Zoccola  26 , Cristina Sancricca  35 , Vincenzo Nigro  36 , Antonio Trabacca  37 , Andrea Vianello  38 , Claudio Bruno  27   39
Affiliations

Emergencies cards for neuromuscular disorders 1st Consensus Meeting from UILDM - Italian Muscular Dystrophy Association Workshop report

Fabrizio Racca et al. Acta Myol. .

Abstract

Acute hospitalisation may be required to support patients with Neuromuscular disorders (NMDs) mainly experiencing respiratory complications, swallowing difficulties, heart failure, urgent surgical procedures. As NMDs may need specific treatments, they should be ideally managed in specialized hospitals. Nevertheless, if urgent treatment is required, patients with NMD should be managed at the closest hospital site, which may not be a specialized centre where local emergency physicians have the adequate experience to manage these patients. Although NMDs are a group of conditions that can differ in terms of disease onset, progression, severity and involvement of other systems, many recommendations are transversal and apply to the most frequent NMDs. Emergency Cards (EC), which report the most common recommendations on respiratory and cardiac issues and provide indications for drugs/treatments to be used with caution, are actively used in some countries by patients with NMDs. In Italy, there is no consensus on the use of any EC, and a minority of patients adopt it regularly in case of emergency. In April 2022, 50 participants from different centres in Italy met in Milan, Italy, to agree on a minimum set of recommendations for urgent care management which can be extended to the vast majority of NMDs. The aim of the workshop was to agree on the most relevant information and recommendations regarding the main topics related to emergency care of patients with NMD in order to produce specific ECs for the 13 most frequent NMDs.

Keywords: anaesthesia; cardiac complications; critical care; emergency card; neuromuscular diseases; respiratory complications; swallowing difficulties.

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