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个体化远程监督运动活动方案促进雷特综合征患者康复目标的实现、运动功能和身体活动:一项单队列研究。

Individualized Remotely Supervised Motor Activity Programs Promote Rehabilitation Goal Achievement, Motor Functioning, and Physical Activity of People with Rett Syndrome-A Single-Cohort Study.

机构信息

Department of Health System Management, Ariel University, Ariel 4070000, Israel.

Airett Innovation and Research Center, 37122 Verona, Italy.

出版信息

Int J Environ Res Public Health. 2022 Dec 30;20(1):659. doi: 10.3390/ijerph20010659.

DOI:10.3390/ijerph20010659
PMID:36612980
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9819180/
Abstract

BACKGROUND

Gross motor function in Rett syndrome (RTT) is always limited. The complex clinical picture typical of most people with RTT requires intensive and specific rehabilitation programs. Previous reports on remotely supervised motor activity programs suggested positive outcomes for this population. The current article describes the impact of a remote-supervised motor activity program carried out by family members of individuals with RTT on achieving rehabilitation goals and improving gross and fine motor functioning and daily physical activity.

METHODS

Forty subjects with RTT followed a three-month remotely supervised motor activity program carried out by their family members at home after a three-month baseline period. After the end of the intervention, a three-month wash-out period was implemented. Rehabilitation goal achievement, motor functioning, and level of daily physical activity were measured.

RESULTS

82.4% of rehabilitation goals were achieved or overachieved. Participants' motor functioning and physical activity significantly increased after the intervention ( ˂ 0.001). Improvements were maintained after the wash-out phase.

CONCLUSIONS

The proposed intervention was effective for people with RTT of various ages and severity levels. The results highlight the need for lifelong, individualized, daily based, and professionally supervised rehabilitation possibilities for individuals with RTT.

摘要

背景

Rett 综合征(RTT)患者的总体运动功能总是受限。大多数 RTT 患者的典型复杂临床表现需要密集且特定的康复计划。之前关于远程监督运动活动计划的报告表明,该人群的结果为阳性。本文描述了由 RTT 患者的家庭成员在家中进行远程监督的运动活动计划对实现康复目标以及改善总体和精细运动功能和日常身体活动的影响。

方法

40 名 RTT 患者在经过三个月的基线期后,由其家庭成员在家中进行为期三个月的远程监督运动活动计划。干预结束后,进行为期三个月的洗脱期。测量康复目标的实现、运动功能和日常身体活动水平。

结果

82.4%的康复目标得以实现或超额实现。参与者的运动功能和身体活动在干预后显著增加(<0.001)。在洗脱期后,改善仍得以维持。

结论

该干预措施对各种年龄和严重程度的 RTT 患者均有效。结果强调了需要为 RTT 患者提供终身、个性化、基于日常且由专业人员监督的康复可能性。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c021/9819180/182d303172fe/ijerph-20-00659-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c021/9819180/182d303172fe/ijerph-20-00659-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c021/9819180/182d303172fe/ijerph-20-00659-g001.jpg

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Dev Med Child Neurol. 2023 Apr;65(4):489-497. doi: 10.1111/dmcn.15436. Epub 2022 Oct 25.
2
Repeated Motor Training on Attention Reaching Skills and Stereotypies in Rett Syndrome.雷特综合征中针对注意力、伸手技能和刻板行为的重复运动训练
Mov Disord Clin Pract. 2022 May 19;9(5):637-646. doi: 10.1002/mdc3.13465. eCollection 2022 Jul.
3
Outcome measurement instruments in Rett syndrome: A systematic review.
Rett 综合征的结局测量工具:系统评价。
Eur J Paediatr Neurol. 2022 Jul;39:79-87. doi: 10.1016/j.ejpn.2022.06.003. Epub 2022 Jun 12.
4
Impact of a Remotely Supervised Motor Rehabilitation Program on Maternal Well-Being During the COVID-19 Italian Lockdown.远程监督运动康复计划对意大利新冠疫情封锁期间孕产妇幸福感的影响
Front Psychol. 2022 Mar 7;13:834419. doi: 10.3389/fpsyg.2022.834419. eCollection 2022.
5
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Comparing Advanced with Basic Telerehabilitation Technologies for Patients with Rett Syndrome-A Pilot Study on Behavioral Parameters.比较雷特综合征患者高级与基础远程康复技术:行为参数的初步研究。
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