Care Delivery for Children With Epilepsy During the COVID-19 Pandemic: An International Survey of Clinicians

Author:

Wirrell Elaine C.12,Grinspan Zachary M.32,Knupp Kelly G.4,Jiang Yuwu5,Hammeed Biju6,Mytinger John R.7,Patel Anup D.7ORCID,Nabbout Rima8,Specchio Nicola9,Cross J. Helen10,Shellhaas Renée A.11ORCID

Affiliation:

1. Divisions of Child and Adolescent Neurology and Epilepsy, Department of Neurology, Mayo Clinic, Rochester, MN, USA

2. These are co-first authors of this article.

3. Departments of Population Sciences and Pediatrics, Weill Cornell Medicine, New York, NY, USA

4. Department of Pediatrics and Neurology, University of Colorado Anschutz Medical Campus, Aurora, CO, USA

5. Department of Pediatrics, Peking University First Hospital, Beijing, China

6. Paediatric Neurosciences, Great Ormond Street Children’s Hospital, London, United Kingdom

7. Department of Pediatrics, Division of Pediatric Neurology, Nationwide Children’s Hospital, The Ohio State University, Columbus, OH, USA

8. Centre de Reference Epilepsies Rares, Department of Pediatric Neurology, Necker Enfants Malades Hospital, Imagine Institute, Paris Descartes University, Paris, France

9. Rare and Complex Epilepsy Unit, Department of Neuroscience, Bambino Gesu’ Children’s Hospital, IRCCS, Rome, Italy and Member of European Reference Network EpiCARE

10. Developmental Neurosciences, UCL NIHR BRC Great Ormond Street Institute of Child Health, London, WC1 N 1EH, & and Member of European Reference Network EpiCARE

11. Department of Pediatrics (Pediatric Neurology), Michigan Medicine, University of Michigan, Ann Arbor, MI, USA

Abstract

Objective: To evaluate the effect of the COVID-19 pandemic on global access to care and practice patterns for children with epilepsy. Methods: We conducted a cross-sectional, online survey of pediatric neurologists across the world affiliated with the International Child Neurology Association, the Chinese Child Neurology Society, the Child Neurology Society, and the Pediatric Epilepsy Research Consortium. Results were analyzed in relation to regional burden of COVID-19 disease. Results: From April 10 to 24, 2020, a sample of 212 respondents from 49 countries indicated that the COVID-19 pandemic has dramatically changed many aspects of pediatric epilepsy care, with 91.5% reporting changes to outpatient care, 90.6% with reduced access to electroencephalography (EEG), 37.4% with altered management of infantile spasms, 92.3% with restrictions in ketogenic diet initiation, 93.4% with closed or severely limited epilepsy monitoring units, and 91.3% with canceled or limited epilepsy surgery. Telehealth use had increased, with 24.7% seeing patients exclusively via telehealth. Changes in practice were related both to COVID-19 burden and location. Conclusions: In response to COVID-19, pediatric epilepsy programs have implemented crisis standards of care that include increased telemedicine, decreased EEG use, changes in treatments of infantile spasms, and cessation of epilepsy surgery. The long-term impact of these abrupt changes merit careful study.

Publisher

SAGE Publications

Subject

Neurology (clinical),Pediatrics, Perinatology and Child Health

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