上海地区肌萎缩侧索硬化症患者接受综合治疗现状分析

目的:对上海地区肌萎缩侧索硬化症(ALS)患者接受综合治疗(integrative therapy,IT)状况进行调查。方法:在上海12家医院开展横向的多中心临床流行病学调查,调查涉及ALS患者使用IT的种类和频率,并且明确IT的使用是否与人口、社会环境及患者自身的疾病特征有关。结果:受访的258例ALS患者中,231例(89.5%)符合纳入标准,其中有229例患者应用了至少1种IT。维生素、中药复方汤剂、中成药、推拿、针灸是5种最常用的IT。患者受教育程度、家庭收入与IT的应用存在较强的相关性。家庭年收入超过75 000元人民币的患者往往应用多种IT,已婚患者较未婚患者更多地应用IT。应用IT的主要原因是治疗虚弱、疲劳、肌萎缩、抑郁、失眠、肢体疼痛或麻木,控制ALS的进展及减少利鲁唑的副作用。少数患者报告说从IT中获得了一些疗效。所有应用IT患者的IT平均成本是每月1 669元。结论:在上海地区的ALS患者中IT的应用非常普遍,维生素和中药是最为常用的IT。值得关注的是,大量未经核实是否有效的IT也被广泛应用于ALS的治疗中,在医院接受医师正规治疗时推荐使用IT仅是ALS患者综合治疗中的一部分。

Application of Integrative Therapies in Patients with Amyotrophic Lateral Sclerosis in Shanghai District

Objective： To investigate the current application of integrative therapies （IT） in treating patients with amyotrophic lateral sclerosis （ALS） in Shanghai district. Methods： A cross-sectional, multiccenter clinical epidemiological survey was conducted in 12 hospitals in Shanghai. The survey involved in the type and frequency of IT, and confirmed whether the application of IT was concerned with demography, social condition, and disease-specific characteristics in patient population. Resultsi Two hundred and fifty-eight paiients were visited, 231 patients （89.5%） were included, and 229 cases applied one IT at least. Vitamin, Chinese herb decoction, Chinese herb compound, massage and acupuncture were the 5 most commonly used therapies. There was a strong association between education level, income, and the use of IT. The patients whose household annual income was more than 75 000 RMB often applied multiple IT, and the married patients used more IT than single patients. The main reasons for applying IT were to treat weakness, fatigue, muscle atrophy, depression, insomnia, and limb pain or numbness, control the development of ALS, and reduce the side effects of Riluzole. Only a few patients reported that they obtained additional effects from IT. The average cost of IT for all IT users was l 669 RMB per month. Conclusion： The use of IT is conunon in patients with ALS in Shanghai, and vitamin and Chinese medicine are the most commonly used therapies. A large number of unconfirmed IT is applied in treating ALS, and only a part of physicians introduced IT in their clinical practices.