肌萎缩侧索硬化患者使用内镜经皮胃造瘘的影响因素

Factors affecting acceptance of percutaneous endoscopic gastrostomy in patients with amyotrophic lateral sclerosis

目的:研究北京大学第三医院肌萎缩侧索硬化(ALS)患者内镜经皮胃造瘘(PEG)的使用情况,对影响其接受或拒绝使用PEG的因素进行分析.方法:对472例2005-01-01/2007-12-31被诊断为ALS的患者PEG使用情况进行现况调查,使用包括影响PEG接受的共16个问题的统一问卷,通过面访、电话、网络进行,对所有调查结果进行统计分析及比较.结果:本研究中ALS患者PEG的总使用率为4.4%(21/472).按逐年计算,每年使用PEG的ALS患者比例分别是:2005年1.85%(1/54),2006年1.66%(2/120),2007年6.04%(18/298).在所有接受PEG的患者中,大多数(16/21,76.2%)患者在首发症状出现前3年内进行了本项治疗.ALS患者接受PEG的主要原因依次为医生的建议(19/21,90.5%)、吞咽困难(15/21,71.4%)和PEG相关宣传材料(10/21,47.6%).妨碍ALS患者进行PEG的主要因素包括缺少医生的建议(228/451,50.6%)、不了解PEG相关知识(178/451,39.5%)、害怕手术风险和疼痛(178/451,39.5%)以及担心保留造瘘管会造成生活不便(177/451,39.2%).结论:ALS患者PEG的使用率仍偏低,影响ALS患者接受该项姑息治疗的最主要因素是医师的建议.

AIM：To investigate the conditions of use of percutaneous endoscopic gastrostomy（PEG） in Chinese patients with amyotrophic lateral sclerosis（ALS） and to analyze factors affecting acceptance of PEG in ALS patients.METHODS：A total of 472 Chinese patients with ALS diagnosed from January 2005 to December 2007 were investigated using a specially designed questionnaire which contained 16 items pertaining to information about use of PEG.The investigation was performed via face to face/telephone/internet.The acquired data were analyzed and compared.RESULTS：The overall percentage of ALS patients using PEG was 4.45%（21/472）.This percentage year by year was 1.85%（1/54） in 2005,1.66%（2/120） in 2006,and 6.04%（18/298） in 2007.Primary factor that made patients to receive PEG was doctors＇ advices（19/21,90.5%）,and other important causes were dysphagia（15/21,71.4%） and propagating materials（10/21,47.6%）.The key ingredients preventing patients from using PEG were absence of doctors＇ advices（228/451,50.6%）,incomprehension to PEG（178/451,39.5%）,dread of risk and pain from PEG operation（178/451,39.5%）,and thought of incommodiousness post PEG（177/451,39.2%）.CONCLUSION：The percentage of use of PEG in Chinese patients with ALS is low.The predominant factors affecting use of PEG in Chinese patients with ALS is doctors＇advices.