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Issues of COVID-19-related distance learning for children with neuronopathic mucopolysaccharidoses

The COVID-19 pandemic has impacted the education of children around the world, forcing a large proportion of teaching to be carried out remotely. The implications of this disruption have yet to be fully elucidated, but initial assessments suggest that COVID-19-related school closures and reliance on...

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Autores principales: Eisengart, Julie B., Esler, Amy N., Ellinwood, N. Mathew, Hudock, Rebekah L., King, Kelly E., Klein, Terri L., Lee, Chimei, Morton, Jonathan, Stephens, Kim, Ziegler, Richard, O'Neill, Cara
Formato: Online Artículo Texto
Lenguaje:English
Publicado: The Authors. Published by Elsevier Inc. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8553302/
https://www.ncbi.nlm.nih.gov/pubmed/34247933
http://dx.doi.org/10.1016/j.ymgme.2021.06.012
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author Eisengart, Julie B.
Esler, Amy N.
Ellinwood, N. Mathew
Hudock, Rebekah L.
King, Kelly E.
Klein, Terri L.
Lee, Chimei
Morton, Jonathan
Stephens, Kim
Ziegler, Richard
O'Neill, Cara
author_facet Eisengart, Julie B.
Esler, Amy N.
Ellinwood, N. Mathew
Hudock, Rebekah L.
King, Kelly E.
Klein, Terri L.
Lee, Chimei
Morton, Jonathan
Stephens, Kim
Ziegler, Richard
O'Neill, Cara
author_sort Eisengart, Julie B.
collection PubMed
description The COVID-19 pandemic has impacted the education of children around the world, forcing a large proportion of teaching to be carried out remotely. The implications of this disruption have yet to be fully elucidated, but initial assessments suggest that COVID-19-related school closures and reliance on virtual learning may have a long-term negative impact on educational attainment and future earnings as well as life expectancy of children in the United States. Among children with neurodegenerative disorders, such as neuronopathic mucopolysaccharidoses (MPS disorders), the effects of the pandemic are likely to be even greater. We aim to shine a spotlight on the impact of COVID-19 on the education, treatment and general wellbeing of children and families affected by MPS disorders by highlighting the important role that educators and therapists play in supporting the neurocognitive function and quality of life of children with neuronopathic MPS disorders. This article will serve as a resource that caregivers, educators, clinicians and therapists can use when considering how best to advocate for children with neuronopathic MPS disorders in circumstances where in-school teaching or in-clinic treatment is compromised or not possible. Given that the current pandemic is likely to have a prolonged course and impact and that similar epidemics and pandemics are a near certainty in the future, it is essential that steps are taken to support the learning and care of children with neuronopathic MPS disorders. We must prioritize strategies to safely resume this fragile community's access to in-person education and supportive care, and to address gaps that have emerged during prolonged pauses in access, whenever possible.
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spelling pubmed-85533022021-10-29 Issues of COVID-19-related distance learning for children with neuronopathic mucopolysaccharidoses Eisengart, Julie B. Esler, Amy N. Ellinwood, N. Mathew Hudock, Rebekah L. King, Kelly E. Klein, Terri L. Lee, Chimei Morton, Jonathan Stephens, Kim Ziegler, Richard O'Neill, Cara Mol Genet Metab Commentary The COVID-19 pandemic has impacted the education of children around the world, forcing a large proportion of teaching to be carried out remotely. The implications of this disruption have yet to be fully elucidated, but initial assessments suggest that COVID-19-related school closures and reliance on virtual learning may have a long-term negative impact on educational attainment and future earnings as well as life expectancy of children in the United States. Among children with neurodegenerative disorders, such as neuronopathic mucopolysaccharidoses (MPS disorders), the effects of the pandemic are likely to be even greater. We aim to shine a spotlight on the impact of COVID-19 on the education, treatment and general wellbeing of children and families affected by MPS disorders by highlighting the important role that educators and therapists play in supporting the neurocognitive function and quality of life of children with neuronopathic MPS disorders. This article will serve as a resource that caregivers, educators, clinicians and therapists can use when considering how best to advocate for children with neuronopathic MPS disorders in circumstances where in-school teaching or in-clinic treatment is compromised or not possible. Given that the current pandemic is likely to have a prolonged course and impact and that similar epidemics and pandemics are a near certainty in the future, it is essential that steps are taken to support the learning and care of children with neuronopathic MPS disorders. We must prioritize strategies to safely resume this fragile community's access to in-person education and supportive care, and to address gaps that have emerged during prolonged pauses in access, whenever possible. The Authors. Published by Elsevier Inc. 2021 2021-07-06 /pmc/articles/PMC8553302/ /pubmed/34247933 http://dx.doi.org/10.1016/j.ymgme.2021.06.012 Text en © 2021 The Authors Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID-19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active.
spellingShingle Commentary
Eisengart, Julie B.
Esler, Amy N.
Ellinwood, N. Mathew
Hudock, Rebekah L.
King, Kelly E.
Klein, Terri L.
Lee, Chimei
Morton, Jonathan
Stephens, Kim
Ziegler, Richard
O'Neill, Cara
Issues of COVID-19-related distance learning for children with neuronopathic mucopolysaccharidoses
title Issues of COVID-19-related distance learning for children with neuronopathic mucopolysaccharidoses
title_full Issues of COVID-19-related distance learning for children with neuronopathic mucopolysaccharidoses
title_fullStr Issues of COVID-19-related distance learning for children with neuronopathic mucopolysaccharidoses
title_full_unstemmed Issues of COVID-19-related distance learning for children with neuronopathic mucopolysaccharidoses
title_short Issues of COVID-19-related distance learning for children with neuronopathic mucopolysaccharidoses
title_sort issues of covid-19-related distance learning for children with neuronopathic mucopolysaccharidoses
topic Commentary
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8553302/
https://www.ncbi.nlm.nih.gov/pubmed/34247933
http://dx.doi.org/10.1016/j.ymgme.2021.06.012
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