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Issues of COVID-19-related distance learning for children with neuronopathic mucopolysaccharidoses
Molecular Genetics and Metabolism ( IF 3.7 ) Pub Date : 2021-07-06 , DOI: 10.1016/j.ymgme.2021.06.012
Julie B Eisengart 1 , Amy N Esler 1 , N Mathew Ellinwood 2 , Rebekah L Hudock 1 , Kelly E King 1 , Terri L Klein 2 , Chimei Lee 1 , Jonathan Morton 3 , Kim Stephens 4 , Richard Ziegler 1 , Cara O'Neill 5
Affiliation  

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.



中文翻译:

患有神经性粘多糖贮积症儿童的 COVID-19 相关远程学习问题

COVID-19 大流行影响了世界各地儿童的教育,迫使大部分教学在远程进行。这种中断的影响尚未完全阐明,但初步评估表明,与 COVID-19 相关的学校停课和对虚拟学习的依赖可能对教育程度和未来收入以及儿童的预期寿命产生长期的负面影响在美国。在患有神经性粘多糖贮积症(MPS 疾病)等神经退行性疾病的儿童中,大流行的影响可能更大。我们的目标是聚焦 COVID-19 对教育的影响,通过强调教育工作者和治疗师在支持患有神经性 MPS 疾病的儿童的神经认知功能和生活质量方面发挥的重要作用,为受 MPS 疾病影响的儿童和家庭提供治疗和总体健康。本文将作为护理人员、教育工作者、临床医生和治疗师在考虑如何在学校教学或临床治疗受到损害或不可能的情况下最好地为患有神经源性 MPS 疾病的儿童提倡时可以使用的资源。鉴于当前的大流行病可能会持续很长时间并产生影响,并且类似的流行病和大流行病几乎可以肯定会在未来发生,因此必须采取措施支持患有神经性 MPS 疾病的儿童的学习和护理。

更新日期:2021-07-06
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