Impact of the COVID-19 pandemic on the standard of care for patients with lysosomal storage diseases : a survey of healthcare professionals in the Fabry, Gaucher, and Hunter Outcome Survey registries

Detalhes bibliográficos
Autor(a) principal: Elstein, Deborah
Data de Publicação: 2021
Outros Autores: Giugliani, Roberto, Muenzer, Joseph, Schenk, Jörn Magnus, Schwartz, Ida Vanessa Doederlein, Anagnostopoulou, Christina
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Institucional da UFRGS
Texto Completo: http://hdl.handle.net/10183/234547
Resumo: the needs of their healthcare providers were explored using a 12-question survey. Overall, 80/91 respondents (88%) indicated that the pandemic had negatively affected standards of care. With increased reliance on tele-medicine, the respondents highlighted the need for a personalized approach to care, direct and frequent communication with patients, and greater involvement of patients and caregivers.
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spelling Elstein, DeborahGiugliani, RobertoMuenzer, JosephSchenk, Jörn MagnusSchwartz, Ida Vanessa DoederleinAnagnostopoulou, Christina2022-01-27T04:34:31Z20212214-4269http://hdl.handle.net/10183/234547001135974the needs of their healthcare providers were explored using a 12-question survey. Overall, 80/91 respondents (88%) indicated that the pandemic had negatively affected standards of care. With increased reliance on tele-medicine, the respondents highlighted the need for a personalized approach to care, direct and frequent communication with patients, and greater involvement of patients and caregivers.application/pdfengMolecular genetics and metabolism reports. New York. Vol. 28 (2021), 100788, 4 p.COVID-19Doença de FabryDoenças por armazenamento dos lisossomosDoença de GaucherMucopolissacaridose IILysosomal storage diseaseFabry Outcome SurveyGaucher Outcome SurveyHunter Outcome SurveyCOVID-19Standard of careImpact of the COVID-19 pandemic on the standard of care for patients with lysosomal storage diseases : a survey of healthcare professionals in the Fabry, Gaucher, and Hunter Outcome Survey registriesEstrangeiroinfo:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/openAccessreponame:Repositório Institucional da UFRGSinstname:Universidade Federal do Rio Grande do Sul (UFRGS)instacron:UFRGSTEXT001135974.pdf.txt001135974.pdf.txtExtracted Texttext/plain23640http://www.lume.ufrgs.br/bitstream/10183/234547/2/001135974.pdf.txta37cc28fcd45595681870d22916c51efMD52ORIGINAL001135974.pdfTexto completo (inglês)application/pdf547770http://www.lume.ufrgs.br/bitstream/10183/234547/1/001135974.pdfae70d754c5c8b9ca5963f351a2865b69MD5110183/2345472022-02-22 05:11:21.353488oai:www.lume.ufrgs.br:10183/234547Repositório de PublicaçõesPUBhttps://lume.ufrgs.br/oai/requestopendoar:2022-02-22T08:11:21Repositório Institucional da UFRGS - Universidade Federal do Rio Grande do Sul (UFRGS)false
dc.title.pt_BR.fl_str_mv Impact of the COVID-19 pandemic on the standard of care for patients with lysosomal storage diseases : a survey of healthcare professionals in the Fabry, Gaucher, and Hunter Outcome Survey registries
title Impact of the COVID-19 pandemic on the standard of care for patients with lysosomal storage diseases : a survey of healthcare professionals in the Fabry, Gaucher, and Hunter Outcome Survey registries
spellingShingle Impact of the COVID-19 pandemic on the standard of care for patients with lysosomal storage diseases : a survey of healthcare professionals in the Fabry, Gaucher, and Hunter Outcome Survey registries
Elstein, Deborah
COVID-19
Doença de Fabry
Doenças por armazenamento dos lisossomos
Doença de Gaucher
Mucopolissacaridose II
Lysosomal storage disease
Fabry Outcome Survey
Gaucher Outcome Survey
Hunter Outcome Survey
COVID-19
Standard of care
title_short Impact of the COVID-19 pandemic on the standard of care for patients with lysosomal storage diseases : a survey of healthcare professionals in the Fabry, Gaucher, and Hunter Outcome Survey registries
title_full Impact of the COVID-19 pandemic on the standard of care for patients with lysosomal storage diseases : a survey of healthcare professionals in the Fabry, Gaucher, and Hunter Outcome Survey registries
title_fullStr Impact of the COVID-19 pandemic on the standard of care for patients with lysosomal storage diseases : a survey of healthcare professionals in the Fabry, Gaucher, and Hunter Outcome Survey registries
title_full_unstemmed Impact of the COVID-19 pandemic on the standard of care for patients with lysosomal storage diseases : a survey of healthcare professionals in the Fabry, Gaucher, and Hunter Outcome Survey registries
title_sort Impact of the COVID-19 pandemic on the standard of care for patients with lysosomal storage diseases : a survey of healthcare professionals in the Fabry, Gaucher, and Hunter Outcome Survey registries
author Elstein, Deborah
author_facet Elstein, Deborah
Giugliani, Roberto
Muenzer, Joseph
Schenk, Jörn Magnus
Schwartz, Ida Vanessa Doederlein
Anagnostopoulou, Christina
author_role author
author2 Giugliani, Roberto
Muenzer, Joseph
Schenk, Jörn Magnus
Schwartz, Ida Vanessa Doederlein
Anagnostopoulou, Christina
author2_role author
author
author
author
author
dc.contributor.author.fl_str_mv Elstein, Deborah
Giugliani, Roberto
Muenzer, Joseph
Schenk, Jörn Magnus
Schwartz, Ida Vanessa Doederlein
Anagnostopoulou, Christina
dc.subject.por.fl_str_mv COVID-19
Doença de Fabry
Doenças por armazenamento dos lisossomos
Doença de Gaucher
Mucopolissacaridose II
topic COVID-19
Doença de Fabry
Doenças por armazenamento dos lisossomos
Doença de Gaucher
Mucopolissacaridose II
Lysosomal storage disease
Fabry Outcome Survey
Gaucher Outcome Survey
Hunter Outcome Survey
COVID-19
Standard of care
dc.subject.eng.fl_str_mv Lysosomal storage disease
Fabry Outcome Survey
Gaucher Outcome Survey
Hunter Outcome Survey
COVID-19
Standard of care
description the needs of their healthcare providers were explored using a 12-question survey. Overall, 80/91 respondents (88%) indicated that the pandemic had negatively affected standards of care. With increased reliance on tele-medicine, the respondents highlighted the need for a personalized approach to care, direct and frequent communication with patients, and greater involvement of patients and caregivers.
publishDate 2021
dc.date.issued.fl_str_mv 2021
dc.date.accessioned.fl_str_mv 2022-01-27T04:34:31Z
dc.type.driver.fl_str_mv Estrangeiro
info:eu-repo/semantics/article
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
format article
status_str publishedVersion
dc.identifier.uri.fl_str_mv http://hdl.handle.net/10183/234547
dc.identifier.issn.pt_BR.fl_str_mv 2214-4269
dc.identifier.nrb.pt_BR.fl_str_mv 001135974
identifier_str_mv 2214-4269
001135974
url http://hdl.handle.net/10183/234547
dc.language.iso.fl_str_mv eng
language eng
dc.relation.ispartof.pt_BR.fl_str_mv Molecular genetics and metabolism reports. New York. Vol. 28 (2021), 100788, 4 p.
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.source.none.fl_str_mv reponame:Repositório Institucional da UFRGS
instname:Universidade Federal do Rio Grande do Sul (UFRGS)
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instacron_str UFRGS
institution UFRGS
reponame_str Repositório Institucional da UFRGS
collection Repositório Institucional da UFRGS
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