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[脊髓性肌萎缩症家庭康复与护理的最新研究]

[Recent research on home rehabilitation and nursing for spinal muscular atrophy].

作者信息

Leng Ming-Yue, Peng Hong-Hao, Wu Zhi-Feng

机构信息

Department of Pediatrics, Second Affiliated Hospital of the Army Medical University, Chongqing 400037, China.

出版信息

Zhongguo Dang Dai Er Ke Za Zhi. 2024 Apr 15;26(4):420-424. doi: 10.7499/j.issn.1008-8830.2310037.

Abstract

Spinal muscular atrophy (SMA) is an autosomal recessive neuromuscular disorder. With the emergence of disease-modifying therapies, the prognosis of SMA has significantly improved, drawing increased attention to the importance of home rehabilitation and nursing management. Long-term, standardized home rehabilitation and nursing can delay the progression of SMA, enhance the psychological well-being, and improve the quality of life of both patients and caregivers. This article provides an overview of the goals of home rehabilitation, basic functional training methods, respiratory management, and nutritional management for SMA patients, as well as psychological health issues, emphasizing the significance of obtaining appropriate home rehabilitation and support during the care process.

摘要

脊髓性肌萎缩症(SMA)是一种常染色体隐性神经肌肉疾病。随着疾病修饰疗法的出现,SMA的预后有了显著改善,这使得人们越来越关注家庭康复和护理管理的重要性。长期、标准化的家庭康复和护理可以延缓SMA的进展,增强心理幸福感,并改善患者和护理人员的生活质量。本文概述了SMA患者家庭康复的目标、基本功能训练方法、呼吸管理、营养管理以及心理健康问题,强调了在护理过程中获得适当家庭康复和支持的重要性。

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本文引用的文献

1
[Expert consensus on newborn screening for spinal muscular atrophy (2023 edition)].脊髓性肌萎缩症新生儿筛查专家共识(2023年版)
Zhonghua Yi Xue Za Zhi. 2023 Jul 18;103(27):2075-2081. doi: 10.3760/cma.j.cn112137-20230310-00372.
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[Expert consensus on rehabilitation management of the spinal muscular atrophy].[脊髓性肌萎缩症康复管理专家共识]
Zhonghua Er Ke Za Zhi. 2022 Sep 2;60(9):883-887. doi: 10.3760/cma.j.cn112140-20220315-00201.
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Spinal muscular atrophy.脊髓性肌萎缩症。
Nat Rev Dis Primers. 2022 Aug 4;8(1):52. doi: 10.1038/s41572-022-00380-8.

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