Providing high-quality care remotely to patients with rare bone diseases during COVID-19 pandemic
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(2020) 15:228
POSITION STATEMENT
Open Access
Providing high-quality care remotely to patients with rare bone diseases during COVID-19 pandemic E. Brizola1, G. Adami2, G. I. Baroncelli3, M. F. Bedeschi4, P. Berardi5, S. Boero6, M. L. Brandi7, L. Casareto1, E. Castagnola8, P. Fraschini9, D. Gatti2, S. Giannini10, M. V. Gonfiantini11, V. Landoni12, A. Magrelli13, G. Mantovani14,15, M. B. Michelis6, L. A. Nasto6, L. Panzeri5, E. Pianigiani1, A. Scopinaro16, L. Trespidi17, A. Vianello18, G. Zampino19 and L. Sangiorgi20*
Abstract During the COVID-19 outbreak, the European Reference Network on Rare Bone Diseases (ERN BOND) coordination team and Italian rare bone diseases healthcare professionals created the “COVID-19 Helpline for Rare Bone Diseases” in an attempt to provide high-quality information and expertise on rare bone diseases remotely to patients and healthcare professionals. The present position statement describes the key characteristics of the Helpline initiative, along with the main aspects and topics that recurrently emerged as central for rare bone diseases patients and professionals. The main topics highlighted are general recommendations, pulmonary complications, drug treatment, trauma, pregnancy, children and elderly people, and patient associations role. The successful experience of the “COVID-19 Helpline for Rare Bone Diseases” launched in Italy could serve as a primer of gold-standard remote care for rare bone diseases for the other European countries and globally. Furthermore, similar COVID-19 helplines could be considered and applied for other rare diseases in order to implement remote patients’ care. Keywords: 2019-nCoV, Bone diseases, Care, Coronavirus, COVID-19, ERN, Rare diseases, Remote
Background The coronavirus disease 2019 (COVID-19) caused by the novel coronavirus SARS-CoV-2 had its outbreak in December 2019 in China. As per the World Health Organization (WHO) situation report of April 18th 2020, the outbreak stands at more than 2.1 million infected people leading to more than 145.000 deaths globally, and it is rapidly increasing [1]. Common symptoms of COVID-19 disease include fever, dry cough, dyspnoea, vomiting, diarrhoea, fatigue and myalgia [2, 3]. Symptoms can take from 2 to 14 days to appear after exposure. The virus is spread by respiratory droplets * Correspondence: [email protected] 20 Department of Rare Skeletal Disorders & CLIBI Laboratory, IRCCS Istituto Ortopedico Rizzoli, Bologna, Italy Full list of author information is available at the end of the article
(generated from coughs or sneezes) through close contact with an infected person or touching surfaces exposed to the virus. The majority of the cases (> 80%) are asymptomatic or have a relatively mild course being selfmanaged at home. However, around 20% undergo more severe and complicated outcomes once the virus affects the lower respiratory tract and manifests as severe pneumonia [3, 4]. Up to now, in Europe there were more than 1.086.000 positive confirmed cases and at least 65% of the global deaths occurred in
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