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新冠疫情时期的弗里德赖希共济失调:当前影响与未来可能性

Friedreich ataxia in COVID-19 time: current impact and future possibilities.

作者信息

Schirinzi Tommaso, Sancesario Andrea, Castelli Enrico, Bertini Enrico, Vasco Gessica

机构信息

Department of Systems Medicine, University of Roma Tor Vergata, Via Montpellier, 00133, Rome, Italy.

Department of Neurosciences, IRCCS Bambino Gesù Children's Hospital, Rome, Italy.

出版信息

Cerebellum Ataxias. 2021 Jan 6;8(1):4. doi: 10.1186/s40673-020-00127-9.

Abstract

COVID-19 outbreak profoundly impacted on daily-life of patients with neurodegenerative diseases, including those with ataxia. Effects on interventional trials have been recently described. Conversely, changes in physical activity programs, which are crucial in care of ataxic patients, have not been assessed yet.Here we used a structured electronic survey to interview twenty patients with Friedreich ataxia (FA) on changes in physical activity during the lockdown in Italy.Regular physiotherapy was interrupted for most patients and up to 60% of them referred a substantial worsening of self-perceived global health. However, FA patients (especially those mildly affected) adopted voluntarily home-based training strategies and, in 30% of cases, used technology-based tools (TBTs) for exercise.COVID-19 crisis thus disclosed the urgent need to support ataxic patients improving systems for remote physical activity and technology-based assistance.

摘要

新冠疫情对神经退行性疾病患者的日常生活产生了深远影响,包括共济失调患者。近期已有关于其对干预性试验影响的描述。相反,在共济失调患者护理中至关重要的体育活动计划的变化尚未得到评估。在此,我们通过一项结构化电子调查,对20名弗里德赖希共济失调(FA)患者进行访谈,了解意大利封锁期间他们体育活动的变化情况。大多数患者的常规物理治疗被中断,高达60%的患者表示自我感知的整体健康状况大幅恶化。然而,FA患者(尤其是轻度受影响者)自主采用了居家训练策略,30%的患者使用了基于技术的工具(TBTs)进行锻炼。因此,新冠疫情危机揭示了迫切需要支持共济失调患者改善远程体育活动系统和基于技术的援助。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/31b8/7788726/d22fd51dbe42/40673_2020_127_Fig1_HTML.jpg

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