进行性假肥大性肌营养不良患者康复现状调查

目的 调查进行性假肥大性肌营养不良(DMD)患者康复情况与需求。 方法 对2018年10月至2022年3月就诊于安徽医科大学武警总医院DMD门诊患者进行基本信息和康复情况问卷调查。 结果 共发放问卷963份,回收有效问卷944份(98.0%)。患者均为男性,年龄5~27岁,平均(9.24±0.184)岁;710例可独立行走;140例定期到专业机构进行康复训练,618例规律进行有氧运动,416例规律进行关节拉伸训练,292例规律使用辅助器具。538例对康复效果不满意,658例存在康复知识获取困难。Logistic回归显示,规律进行康复锻炼的患者丧失独立行走能力的风险下降(OR < 0.61, P < 0.05)。 结论 DMD患者有较为广泛的康复需求,但有氧运动锻炼率、关节拉伸训练率和辅助器具使用率较低,可能影响患者运动功能和生活质量。

Participation of rehabilitation for patients with Duchenne muscular dystrophy

Objective To investigate the situation and related needs of rehabilitation for patients with Duchenne muscular dystrophy (DMD). Methods From October, 2018 to March, 2022, the patients with DMD of Multiple Disciplinary Team Clinic, General Hospital of Chinese People's Armed Police Force of Anhui Medical University, were investigated basic information and rehabilitation-related issues with questionnaire. Results A total of 963 questionnaires were send out and 944 valid questionnaires were analyzed (98.0%). The patients were all male, aged five to 27 years, with a mean of (9.24±0.184) years. For the 944 patients, 710 cases could walk independently, 140 accepted rehabilitation exercises in institutions regularly, 618 participated aerobic exercise regularly, 416 participated joint stretching regularly, and 292 used aids regularly; 538 dissatisfied the effect of rehabilitation, and 658 complained the difficulties in acquiring rehabilitation knowledge. Logistic regression showed that regular rehabilitation participation reduced the risk of walking loss (OR < 0.61, P < 0.05). Conclusion Patients with DMD need an extensive range of rehabilitation, while the participation of aerobic exercise, joint stretching training and the use of aids is poor, which may influence the motor function and quality of life.