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
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Data de Publicação: | 2021 |
Outros Autores: | , , , , |
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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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. |
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info:eu-repo/semantics/openAccess |
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openAccess |
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application/pdf |
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