Department of Pediatrics, University of Minnesota, Minneapolis, MN, USA.
Department of Pediatrics, University of Minnesota, Minneapolis, MN, USA.
Mol Genet Metab. 2021 Sep-Oct;134(1-2):68-76. doi: 10.1016/j.ymgme.2021.06.012. Epub 2021 Jul 6.
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.
新型冠状病毒肺炎疫情（COVID-19）对全球儿童教育产生了影响，迫使大部分教学转为远程进行。其造成的破坏影响尚未完全阐明，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，可能对美国儿童的教育程度和未来收入以及预期寿命产生长期的负面影响。在患有神经退行性疾病的儿童中，如神经病变型黏多糖贮积症（MPS 疾病），疫情的影响可能更大。我们旨在通过强调教育者和治疗师在支持神经认知功能和生活质量方面所发挥的重要作用，关注 COVID-19 对患有神经病变型 MPS 疾病儿童的教育、治疗和整体福祉的影响。本文旨在为护理人员、教育工作者、临床医生和治疗师提供资源，以便在学校教学或临床治疗受到影响或无法进行的情况下，为患有神经病变型 MPS 疾病的儿童提供最佳的支持。鉴于当前的大流行可能会持续很长时间并产生影响，而且未来类似的流行病和大流行几乎是肯定会发生的，因此，必须采取措施支持患有神经病变型 MPS 疾病儿童的学习和护理。我们必须优先考虑安全恢复这一脆弱群体接受面对面教育和支持性护理的策略，并尽可能解决在长时间中断后出现的差距。
