Effect of the COVID-19 pandemic on patients with inherited neuromuscular disorders

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dc.contributorSistema FMUSP-HC: Faculdade de Medicina da Universidade de São Paulo (FMUSP) e Hospital das Clínicas da FMUSP
dc.contributor.authorMORENO, Cristiane Araujo Martins
dc.contributor.authorCAMELO, Clara Gontijo
dc.contributor.authorSAMPAIO, Pedro Henrique Marte de Arruda
dc.contributor.authorFONSECA, Alulin Tacio Quadros Santos Monteiro
dc.contributor.authorESTEPHAN, Eduardo de Paula
dc.contributor.authorSILVA, Andre Macedo Serafim
dc.contributor.authorPIROLA, Renann Nunes
dc.contributor.authorSILVA, Luiz Henrique Libardi
dc.contributor.authorLIMA, Karlla Danielle Ferreira
dc.contributor.authorALBUQUERQUE, Marco Antonio Veloso de
dc.contributor.authorCAMELO FILHO, Antonio Edvan
dc.contributor.authorMARQUES, Marcos Vinicius Oliveira
dc.contributor.authorYANAGIURA, Mario Teruo
dc.contributor.authorCAVALCANTE, Wagner Cid Palmeira
dc.contributor.authorMATSUI JUNIOR, Ciro
dc.contributor.authorISIHI, Lucas Michielon de Augusto
dc.contributor.authorMENDONCA, Rodrigo Holanda
dc.contributor.authorPOUZA, Ana Flavia Pincerno
dc.contributor.authorCARVALHO, Mary Souza de
dc.contributor.authorREED, Umbertina Conti
dc.contributor.authorZANOTELI, Edmar
dc.date.accessioned2022-10-26T14:31:09Z
dc.date.available2022-10-26T14:31:09Z
dc.date.issued2022
dc.description.abstractBackground: The COVID-19 pandemic has brought substantial challenges for current practices in treating hereditary neuromuscular disorders (hNMDs). However, this infection has not been the only concern for these patients. Social distancing has compromised multidisciplinary assistance and physical activity, and has brought about several mental health issues. We presented a follow-up on 363 patients with hNMDs at a Brazilian tertiary center during the peak of the COVID-19 pandemic. Objective: We aimed to show the frequency and severity of SARS-CoV-2 infection among hNMD patients and to demonstrate the effects of the pandemic on life habits, disease progression and multidisciplinary supportive care status. Methods:Three hundred and sixty-three patients (58% male and 42% female) were followed for three months through three teleconsultations during the peak of the COVID-19 pandemic in Brazil. Results: There were decreases in the numbers of patients who underwent physical, respiratory and speech therapies. For several patients, their appetite (33%) and sleep habits (25%) changed. Physical exercises and therapies were interrupted for most of the patients. They reported new onset/worsening of fatigue (17%), pain (17%), contractions (14%) and scoliosis (7%). Irritability and sleep, weight and appetite changes, and especially diminished appetite and weight loss, were more frequent in the group that reported disease worsening. There was a low COVID-19 contamination rate (0.8%), and all infected patients had a mild presentation. Conclusion: The isolation by itself was protective from a COVID-19 infection perspective. However, this isolation might also trigger a complex scenario with life habit changes that are associated with an unfavorable course for the NMD.eng
dc.description.abstractAntecedentes: A Pandemia por COVID-19 tem trazido desafios subtanciais para a prática clínica no tratamento das doenças neuromusculares hereditárias (DNMh). A infecção não tem sido a única preocupação para os pacientes. O distanciamento social tem comprometido a assistência multidisciplinar, atividade física e tem trazido problemas mentais em decorrência do próprio isolamento. Nós apresentamos aqui um seguimento de 363 pacientes com DNMh de um centro terciário Brasileiro durante o pico da Pandemia de Covid-19. Objetivos: Mostrar a frequência e gravidade da infecção por Sars-Cov-2 em pacientes com DNMh e demonstrar os efeitos da pandemia nos hábitos de vida, na progressão da doença e no cuidado multidisciplinary. Métodos Trezentos e sessenta e três pacientes (58% homens and 42% mulheres) foram acompanhados por 3 meses através de 3 teleconsultas durante o pico da Pandemia de Covid-19 no Brasil. Resultados Houve um decréscimo no número de pacientes que faziam terapia física, respiratória e fonoaudiológica. Em muitos pacientes, o apetite (33%) e hábitos do sono (25%) se alteraram. Exercícios físicos e terapias foram interrompidas pela maioria dos pacientes. Physical exercises and therapies were interrupted for most of the patients. Eles relataram piora ou aparecimento de fadiga (17%), dor (17%), retrações (14%), e escoliose (7%). Irritabilidade, mudanças no sono, peso e apetite, sendo principalmente diminuição do apetite e peso foram mais frequentemente encontrados em pacientes que apresentaram piora clinica da doença. Houve uma baixa taxa de contaminação por Covid-19 (0.8%), e todos os pacientes infectado apresentaram quadro clinico leve. Conclusão O isolamento por si só se mostrou protetor na perspectiva de infecção por Covid-19, mas pode desencadear um cenário complexo com mudanças nos hábitos de vida e curso desfavorável da doença de base.
dc.description.indexMEDLINEeng
dc.identifier.citationARQUIVOS DE NEURO-PSIQUIATRIA, v.80, n.6, p.563-569, 2022
dc.identifier.doi10.1590/0004-282X-ANP-2021-0166
dc.identifier.eissn1678-4227
dc.identifier.issn0004-282X
dc.identifier.urihttps://observatorio.fm.usp.br/handle/OPI/49264
dc.language.isoeng
dc.publisherASSOC ARQUIVOS NEURO- PSIQUIATRIAeng
dc.relation.ispartofArquivos de Neuro-Psiquiatria
dc.rightsopenAccesseng
dc.rights.holderCopyright ASSOC ARQUIVOS NEURO- PSIQUIATRIAeng
dc.subjectNeuromuscular Diseaseseng
dc.subjectCOVID-19eng
dc.subjectSocial Isolationeng
dc.subjectConsequence Analysiseng
dc.subjectDoenças Neuromusculares
dc.subjectIsolamento Social
dc.subjectAnálise de Consequências
dc.subject.otherchildreneng
dc.subject.wosNeuroscienceseng
dc.subject.wosPsychiatryeng
dc.titleEffect of the COVID-19 pandemic on patients with inherited neuromuscular disorderseng
dc.title.alternativeEfeito da pandemia do COVID-19 em pacientes com doenças neuromusculares hereditárias
dc.typearticleeng
dc.type.categoryoriginal articleeng
dc.type.versionpublishedVersioneng
dspace.entity.typePublication
hcfmusp.author.externalISIHI, Lucas Michielon de Augusto:Univ Sao Paulo, Fac Med, Dept Neurol, Sao Paulo, SP, Brazil
hcfmusp.citation.scopus2
hcfmusp.contributor.author-fmusphcCRISTIANE DE ARAUJO MARTINS MORENO
hcfmusp.contributor.author-fmusphcCLARA GONTIJO CAMELO
hcfmusp.contributor.author-fmusphcPEDRO HENRIQUE MARTE DE ARRUDA SAMPAIO
hcfmusp.contributor.author-fmusphcALULIN TACIO QUADROS SANTOS MONTEIRO FONSECA
hcfmusp.contributor.author-fmusphcEDUARDO DE PAULA ESTEPHAN
hcfmusp.contributor.author-fmusphcANDRE MACEDO SERAFIM DA SILVA
hcfmusp.contributor.author-fmusphcRENANN NUNES PIROLA
hcfmusp.contributor.author-fmusphcLUIZ HENRIQUE LIBARDI SILVA
hcfmusp.contributor.author-fmusphcKARLLA DANIELLE FERREIRA LIMA
hcfmusp.contributor.author-fmusphcMARCO ANTONIO VELOSO DE ALBUQUERQUE
hcfmusp.contributor.author-fmusphcANTONIO EDVAN CAMELO FILHO
hcfmusp.contributor.author-fmusphcMARCOS VINICIUS OLIVEIRA MARQUES
hcfmusp.contributor.author-fmusphcMARIO TERUO YANAGIURA
hcfmusp.contributor.author-fmusphcWAGNER CID PALMEIRA CAVALCANTE
hcfmusp.contributor.author-fmusphcCIRO MATSUI JUNIOR
hcfmusp.contributor.author-fmusphcRODRIGO DE HOLANDA MENDONCA
hcfmusp.contributor.author-fmusphcANA FLAVIA PINCERNO POUZA
hcfmusp.contributor.author-fmusphcMARY SOUZA DE CARVALHO
hcfmusp.contributor.author-fmusphcUMBERTINA CONTI REED
hcfmusp.contributor.author-fmusphcEDMAR ZANOTELI
hcfmusp.description.beginpage563
hcfmusp.description.endpage569
hcfmusp.description.issue6
hcfmusp.description.volume80
hcfmusp.origemWOS
hcfmusp.origem.pubmed35946707
hcfmusp.origem.scieloSCIELO:S0004-282X2022000600563
hcfmusp.origem.scopus2-s2.0-85135729776
hcfmusp.origem.wosWOS:000847329900004
hcfmusp.publisher.citySAO PAULO SPeng
hcfmusp.publisher.countryBRAZILeng
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hcfmusp.scopus.lastupdate2024-06-09
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