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

Autor: Christina Anagnostopoulou, Joseph Muenzer, Ida Vanessa Doederlein Schwartz, Roberto Giugliani, Jörn Schenk, Deborah Elstein
Jazyk: angličtina
Rok vydání: 2021
Předmět:
medicine.medical_specialty
Telemedicine
Medicine (General)
Hunter Outcome Survey
Standard of care
Coronavirus disease 2019 (COVID-19)
QH301-705.5
Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2)
Short Communication
Lysosomal storage disease
Doenças por armazenamento dos lisossomos
Doença de Fabry
Fabry Outcome Survey
HCP
healthcare professional
Endocrinology
R5-920
GOS
Gaucher Outcome Survey
MPS II
mucopolysaccharidosis II
Mucopolissacaridose II
Pandemic
Doença de Gaucher
Genetics
medicine
LSD
lysosomal storage disease
Biology (General)
Molecular Biology
COVID-19
coronavirus disease 2019
Health professionals
business.industry
COVID-19
Gaucher Outcome Survey
medicine.disease
ERT
enzyme replacement therapy
HOS
Hunter Outcome Survey
Family medicine
IT
information technology
business
FOS
Fabry Outcome Survey
Healthcare providers
Zdroj: Repositório Institucional da UFRGS
Universidade Federal do Rio Grande do Sul (UFRGS)
instacron:UFRGS
Molecular Genetics and Metabolism Reports
Molecular Genetics and Metabolism Reports, Vol 28, Iss, Pp 100788-(2021)
Popis: 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.
Databáze: OpenAIRE
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