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

The impact of the COVID-19 pandemic on the standards of care of patients with lysosomal storage diseases and 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...

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Detalles Bibliográficos
Autores principales: Elstein, Deborah, Giugliani, Roberto, Muenzer, Joseph, Schenk, Jörn, Schwartz, Ida V.D., Anagnostopoulou, Christina
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Elsevier 2021
Materias:
Short Communication
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8332928/
https://www.ncbi.nlm.nih.gov/pubmed/34367919
http://dx.doi.org/10.1016/j.ymgmr.2021.100788
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author Elstein, Deborah
Giugliani, Roberto
Muenzer, Joseph
Schenk, Jörn
Schwartz, Ida V.D.
Anagnostopoulou, Christina
author_facet Elstein, Deborah
Giugliani, Roberto
Muenzer, Joseph
Schenk, Jörn
Schwartz, Ida V.D.
Anagnostopoulou, Christina
author_sort Elstein, Deborah
collection PubMed
description The impact of the COVID-19 pandemic on the standards of care of patients with lysosomal storage diseases and 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 telemedicine, 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 pubmed-83329282021-08-04 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 Giugliani, Roberto Muenzer, Joseph Schenk, Jörn Schwartz, Ida V.D. Anagnostopoulou, Christina Mol Genet Metab Rep Short Communication The impact of the COVID-19 pandemic on the standards of care of patients with lysosomal storage diseases and 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 telemedicine, the respondents highlighted the need for a personalized approach to care, direct and frequent communication with patients, and greater involvement of patients and caregivers. Elsevier 2021-08-04 /pmc/articles/PMC8332928/ /pubmed/34367919 http://dx.doi.org/10.1016/j.ymgmr.2021.100788 Text en © 2021 The Authors https://creativecommons.org/licenses/by/4.0/This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Short Communication
Elstein, Deborah
Giugliani, Roberto
Muenzer, Joseph
Schenk, Jörn
Schwartz, Ida V.D.
Anagnostopoulou, Christina
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
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_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_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
topic Short Communication
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8332928/
https://www.ncbi.nlm.nih.gov/pubmed/34367919
http://dx.doi.org/10.1016/j.ymgmr.2021.100788
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