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

Highlights

• The COVID-19 pandemic has changed how physicians and patients interact.

• A survey explored the impact of these changes on the care of patients with lysosomal storage diseases.

• 88% of respondents noted that the pandemic had affected standards of care.

• Increased need for personalized care and direct communication was noted.

• Increased reliance on telemedicine was also highlighted.

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.