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.
Mol Genet Metab Rep
; 28: 100788, 2021 Sep.
Article
em En
| MEDLINE
| ID: mdl-34367919
ABSTRACT
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.
COVID-19; COVID-19, coronavirus disease 2019; ERT, enzyme replacement therapy; FOS, Fabry Outcome Survey; Fabry Outcome Survey; GOS, Gaucher Outcome Survey; Gaucher Outcome Survey; HCP, healthcare professional; HOS, Hunter Outcome Survey; Hunter Outcome Survey; IT, information technology; LSD, lysosomal storage disease; Lysosomal storage disease; MPS II, mucopolysaccharidosis II; Standard of care
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Idioma:
En
Revista:
Mol Genet Metab Rep
Ano de publicação:
2021
Tipo de documento:
Article
País de afiliação:
Israel