Pellegrini Nadine, Guillon Bruno, Prigent Hélène, Pellegrini Michel, Orlikovski David, Raphael Jean-Claude, Lofaso Frédéric
Medical ICU and Physiology-Functional Testing Unit, Garches Institute and Technological Innovation Center, Raymond Poincaré Teaching Hospital, AP-HP, 92380 Garches, France.
Neuromuscul Disord. 2004 May;14(5):297-300. doi: 10.1016/j.nmd.2004.02.005.
The extended survival of patients with Duchenne muscular dystrophy (DMD) achieved by the introduction of mechanical ventilation is raising new quality-of-life issues. We evaluated passive range of wrist extension, key pinch strength, and power wheelchair driving in 84 patients. The 47 drivers with restricted driving abilities were older than the 37 unrestricted drivers (27.2+/-5.0 y vs. 22.8+/-3.8 y) and had worse upper limb performance. By multiple logistic regression, only key pinch was significant ( R(2) = 0.224, P = 0.02. Eighteen restricted drivers were reassessed after having swapped a conventional joystick for another control system (mini-joystick, isometric mini-joystick, finger joystick, or pad) and having moved the position of the tested control system so that the patient could use it with different fingers, his chin or his mouth. All of them regained the ability to drive unrestricted. Adults with DMD gradually lose their ability to drive with a conventional joystick but can regain unrestricted driving with alternative control systems.
通过引入机械通气实现的杜氏肌营养不良症（DMD）患者生存期的延长引发了新的生活质量问题。我们评估了84例患者的腕关节被动伸展范围、捏力以及电动轮椅驾驶能力。47名驾驶能力受限的患者比37名不受限的患者年龄更大（分别为27.2±5.0岁和22.8±3.8岁），且上肢功能更差。通过多因素逻辑回归分析，只有捏力具有显著意义（R(2)=0.224，P = 0.02）。18名驾驶受限的患者在将传统操纵杆换成另一种控制系统（迷你操纵杆、等距迷你操纵杆、手指操纵杆或垫板）并调整测试控制系统的位置以便患者能用不同手指、下巴或嘴来使用后，重新接受了评估。他们所有人都恢复了不受限驾驶的能力。成年DMD患者逐渐失去使用传统操纵杆驾驶的能力，但使用替代控制系统可重新获得不受限驾驶的能力。
