伴有呼吸系统疾病的脊髓性肌萎缩症（SMARD）：一个伦理困境。 - Suppr

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Spinal muscular atrophy with respiratory disease (SMARD): an ethical dilemma.

作者信息

Bush Andrew

出版信息

Intensive Care Med. 2006 Nov;32(11):1691-3. doi: 10.1007/s00134-006-0347-7. Epub 2006 Sep 9.

DOI:10.1007/s00134-006-0347-7

PMID:16964484

Abstract

摘要

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Daily living with distress and enrichment: the moral experience of families with ventilator-assisted children at home.带着痛苦与充实生活：家中有使用呼吸机辅助的孩子的家庭的道德体验。

Pediatrics. 2006 Jan;117(1):e48-60. doi: 10.1542/peds.2005-0789.

Respiratory management of the infant with type 1 spinal muscular atrophy.1型脊髓性肌萎缩症婴儿的呼吸管理

Arch Dis Child. 2005 Jul;90(7):709-11. doi: 10.1136/adc.2004.065961.

Quality of life, physical disability, and respiratory impairment in Duchenne muscular dystrophy.杜氏肌营养不良症患者的生活质量、身体残疾及呼吸功能损害

Am J Respir Crit Care Med. 2005 Oct 15;172(8):1032-6. doi: 10.1164/rccm.200503-322OC. Epub 2005 Jun 16.

Respiratory capacity course in patients with infantile spinal muscular atrophy.婴儿型脊髓性肌萎缩症患者的呼吸能力进程

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J Pediatr Nurs. 2004 Aug;19(4):276-87. doi: 10.1016/j.pedn.2004.05.009.

Use of the mechanical in-exsufflator in pediatric patients with neuromuscular disease and impaired cough.机械吸气-呼气装置在患有神经肌肉疾病且咳嗽功能受损的儿科患者中的应用。

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Severe infantile neuropathy with diaphragmatic weakness and its relationship to SMARD1.伴有膈肌无力的严重婴儿神经病及其与脊髓性肌肉萎缩症相关的远端关节松弛1型的关系

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