Expert-opinion-based guidance for the care of children with lysosomal storage diseases during the COVID-19 pandemic: An experience-based Turkey perspective

Abdurrahman Akgun; Gulden Gokcay; Neslihan Onenli Mungan; Hatice Serap Sivri; Hasan Tezer; Cigdem Aktuglu Zeybek; Fatih Ezgu

doi:10.3389/fpubh.2023.1092895

Expert-opinion-based guidance for the care of children with lysosomal storage diseases during the COVID-19 pandemic: An experience-based Turkey perspective

Front Public Health. 2023 Jan 30:11:1092895. doi: 10.3389/fpubh.2023.1092895. eCollection 2023.

Authors

Abdurrahman Akgun¹, Gulden Gokcay², Neslihan Onenli Mungan³, Hatice Serap Sivri⁴, Hasan Tezer⁵, Cigdem Aktuglu Zeybek⁶, Fatih Ezgu⁷

Affiliations

¹ Division of Pediatric Metabolism, Department of Pediatrics, Faculty of Medicine, Firat University, Elazig, Turkey.
² Division of Nutrition and Metabolism, Department of Pediatrics, Faculty of Medicine, Istanbul University, Istanbul, Turkey.
³ Division of Pediatric Metabolism, Department of Pediatrics, Faculty of Medicine, Cukurova University, Adana, Turkey.
⁴ Division of Pediatric Metabolism, Department of Pediatrics, Faculty of Medicine, Hacettepe University, Ankara, Turkey.
⁵ Department of Infectious Diseases, Faculty of Medicine, Gazi University, Ankara, Turkey.
⁶ Division of Pediatric Metabolism, Department of Pediatrics, Faculty of Medicine, Istanbul University Cerrahpasa, Istanbul, Turkey.
⁷ Division of Pediatric Metabolism and Division of Pediatric Genetics, Department of Pediatrics, Faculty of Medicine, Gazi University, Ankara, Turkey.

Abstract

This expert-opinion-based document was prepared by a group of specialists in pediatric inherited metabolic diseases and infectious diseases including administrative board members of Turkish Society for Pediatric Nutrition and Metabolism to provide guidance for the care of children with lysosomal storage disorders (LSDs) during the COVID-19 pandemic in Turkey. The experts reached consensus on key areas of focus regarding COVID-19-based risk status in relation to intersecting immune-inflammatory mechanisms and disease patterns in children with LSDs, diagnostic virus testing, particularly preventive measures and priorities during the pandemic, routine screening and diagnostic interventions for LSDs, psychological and socioeconomic impact of confinement measures and quarantines and optimal practice patterns in managing LSDs and/or COVID-19. The participating experts agreed on the intersecting characteristics of immune-inflammatory mechanisms, end-organ damage and prognostic biomarkers in LSD and COVID-19 populations, emphasizing the likelihood of enhanced clinical care when their interaction is clarified via further studies addressing certain aspects related to immunity, lysosomal dysfunction and disease pathogenesis. In the context of the current global COVID-19 pandemic, this expert-opinion-based document provides guidance for the care of children with LSDs during the COVID-19 pandemic based on the recent experience in Turkey.

Keywords: COVID-19 pandemic; expert opinion; immune-inflammatory mechanisms; lysosomal storage diseases; specialized care.

Publication types

Review
Research Support, Non-U.S. Gov't

MeSH terms

COVID-19* / epidemiology
Child
Humans
Lysosomal Storage Diseases* / diagnosis
Lysosomal Storage Diseases* / epidemiology
Lysosomal Storage Diseases* / therapy
Pandemics
Turkey / epidemiology

Grants and funding

The present work was supported by Sanofi Turkey which played a role in organization of expert panel meeting including invitation of participants and compensation for the time expenses of the experts. Sanofi Turkey had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.