Challenges in Chronic Genetic Disorders: Lessons From the COVID-19 Pandemic

Swasti Pal; Sameer Bhatia; Sunita Bijarnia-Mahay; Ishwar C Verma; Ratna Dua Puri

doi:10.1007/s13312-021-2202-x

Challenges in Chronic Genetic Disorders: Lessons From the COVID-19 Pandemic

Indian Pediatr. 2021 Apr 15;58(4):391-392. doi: 10.1007/s13312-021-2202-x.

Authors

Swasti Pal¹, Sameer Bhatia¹, Sunita Bijarnia-Mahay¹, Ishwar C Verma¹, Ratna Dua Puri²

Affiliations

¹ Institute of Medical Genetics and Genomics, Sir Ganga Ram Hospital, New Delhi, India.
² Institute of Medical Genetics and Genomics, Sir Ganga Ram Hospital, New Delhi, India. [email protected].

Abstract

To examine the impact of the COVID-19 pandemic, we interviewed 26 patients with lysosomal storage disorders receiving enzyme replacement therapy. 20 (77 %) had significant interruption in their treatment, with an average of 8 (range 2-28) missed doses. Alternate methods of delivering uninterrupted care including home therapy were used. Vulnerable patients with chronic genetic disorders require organization for their multidisciplinary needs of care.

Publication types

Letter

MeSH terms

Adolescent
COVID-19* / epidemiology
COVID-19* / prevention & control
Civil Defense / standards
Enzyme Replacement Therapy / methods*
Female
Genetic Diseases, Inborn / epidemiology
Genetic Diseases, Inborn / therapy
Health Services Accessibility* / organization & administration
Health Services Accessibility* / standards
Health Services Needs and Demand
Humans
India / epidemiology
Infection Control
Lysosomal Storage Diseases* / epidemiology
Lysosomal Storage Diseases* / therapy
Male
Medication Therapy Management* / organization & administration
Medication Therapy Management* / standards
SARS-CoV-2
Surveys and Questionnaires