杜氏肌营养不良症（DMD）和贝克型肌营养不良症（Becker）患者用手还是用嘴激活呼叫铃。

Hand versus mouth for call-bell activation by DMD and Becker patients.

作者信息

Pellegrini Nadine, Pelletier Amélie, Orlikowski David, Lolierou Christian, Ruquet Maria, Raphaël Jean-Claude, Lofaso Frédéric

机构信息

Intensive Care Unit and Department of Physiology-Functional Testing, Garches Institute, and Centre for Technological Innovation, Raymond Poincaré Teaching Hospital, AP-HP, 92380 Garches, France.

出版信息

Neuromuscul Disord. 2007 Jul;17(7):532-6. doi: 10.1016/j.nmd.2007.03.016. Epub 2007 May 29.

DOI:10.1016/j.nmd.2007.03.016

PMID:17533130

Abstract

Severe hand dysfunction is common in patients with Duchenne muscular dystrophy (DMD) and may preclude the use of conventional call-bells. We prospectively evaluated a call-bell with two hand-controlled interfaces (push-button and key-pinch) and two mouth-controlled interfaces (sip-or-puff) in 32 consecutive DMD and Becker patients. Patients called intentionally 348 times, using the sip-or-puff device 237 times and the hand-controlled interfaces 147 times. Use of the hand-controlled interfaces correlated with key-pinch strength (R=0.366; P=0.04). Six patients reported being unable to call with the hand interfaces and five patients reported temporary call failure due to inaccessibility of the sip-or-puff interface. Ease-of-use scores on a visual analogue scale were best for puff, followed by sip then key-pinch interrupter and push-button (8.7+/-2.1, 7.5+/-2.7, 6.2+/-3.9, and 0.5+/-2.0 respectively; ANOVA: P<0.00001). In conclusion sip-or-puff devices should be considered more often to provide neuromuscular patients with greater independence.

摘要

严重的手部功能障碍在杜氏肌营养不良症（DMD）患者中很常见，可能会妨碍使用传统的呼叫铃。我们前瞻性地评估了一种带有两种手动控制界面（按钮和键捏）和两种口控界面（吸或吹）的呼叫铃，对32例连续的DMD和贝克肌营养不良症患者进行了评估。患者有意呼叫348次，使用吸或吹装置237次，手动控制界面147次。使用手动控制界面与键捏力量相关（R = 0.366；P = 0.04）。6名患者报告无法使用手动界面呼叫，5名患者报告由于无法使用吸或吹界面而暂时呼叫失败。视觉模拟量表上的易用性评分，吹最好，其次是吸，然后是键捏中断器和按钮（分别为8.7±2.1、7.5±2.7、6.2±3.9和0.5±2.0；方差分析：P < 0.00001）。总之，应更频繁地考虑使用吸或吹装置，以使神经肌肉疾病患者获得更大的独立性。