【作者】 赵玉华；

【导师】 周东；

【作者基本信息】 四川大学 ， 神经病学， 2007， 硕士

【摘要】 背景：由于有效的抗癫痫药物问世已超过一百年，所以限制了癫痫自然史的研究。目前关于癫痫自然史的研究主要基于流行病学和单药治疗的临床研究，而对真正的癫痫的自然史了解主要来源于那些发展中国家的调查，但为数很少。随着医学模式的转变，人们对癫痫的治疗不仅满足于发作的控制，更追求癫痫患者生活质量的提高，使癫痫患者回归社会，成为社会生活的一部分。国外在20世纪70年代开始对癫痫患者的生活质量进行研究，我国近几年也开始了这方面的研究。西藏位于中国西南边疆、青藏高原的西南部。全区平均海拔4000米以上，是世界上面积最大、海拔最高的高原，素有“世界屋脊”之称。西藏自治区是藏族主要聚居的地区。目前全区尚没有独立的神经内科病房，从事神经内科专业的人员寥寥无几，而从事癫痫专业的更是少之有少。目前尚未见该地区的惊厥性癫痫的自然史、患者的生活质量以及患病率、治疗缺口的调查报告。目的：调查藏族惊厥性癫痫自然史、患者生活质量以及西藏农村地区患病率，治疗缺口。对象与方法：1．对126例分别生活在拉萨、昌都、日喀则地区确诊为惊厥性癫痫的藏族患者进行集中为主、家访为辅的面对面问卷调查。收集基本社会情况、诊治现况、疾病自然史，用癫痫患者生活质量评定量表(QOLIE-31)评估患者生活质量。对癫痫自然史进行描述性分析。用多元回归分析法确定影响生活质量的因素。2．利用统一的调查表，对西藏拉萨市墨竹工卡县工卡镇和扎西岗乡、昌都地区芒康县曲孜卡乡进行整群逐户问卷调查。调查分两步：第一步由培训过的基层医生进行逐户筛查；第二步由神经内科专业医生对患者进行确诊。结果：1．QOLIE-31总评分平均为48.58±17.29，其中各分项得分中发作担忧得分最低为32.92±22.97、药物影响的评分最高为77.11±20.98。年龄、职业、文化程度、经济状况、起病年龄、发作次数为QOLIE-31低评分的影响因数(P＜0.05)。而病程、婚姻状况、性别不是影响因素(P＞0.05)。2．共调查14822人，确诊惊厥性癫痫患者37人，患病率2.5‰。其中活动性癫痫患者为35(94.59％)人，患病率为2.4‰。调查前一周内接受西药正规治疗的1人，治疗缺口为97.1％。结论：1．年龄、起病年龄、职业、文化程度、经济状况、发作次数是影响藏族惊厥性癫痫患者生活质量的因素。其中年龄、职业影响生活质量多个方面。而病程、婚姻状况、性别不是影响因素。2．西藏农村地区惊厥性癫痫患病率为2.‰，西医治疗缺口大，主要以藏医藏药治疗为主，对西药治疗癫痫的了解很少。探索一条藏西医结合防治癫痫、提高当地医护人员的癫痫防治知识及公众的健康意识迫在眉睫。更多还原

【Abstract】 Objective: The aim of this survey was To identify factors affecting the quality of life and natural history in Tietan patients with convulsive epilepsy, to find out the prevalence rate of convulsive epilepsy and its treatment gap in rural areas of Tibet Autonomous Region (TAR),Methods: 1. One hundred and twenty-six Tibetan epileptic outpatients were included. Quality of life was evaluated by the Quality of Life in Epilepsy Inventory-31 (QOLIE-31).Univariate analysis and multiple regression analysis were used to determine factors affecting the quality of life in Tibetan patients with convulsive epilepsy.2.cluster sampling was adopted to conduct a door-to-door epidemiological survey among 14822 rural populations in Gongka town, Zhaxigang and Quzika village located in Medrogongka and Markham counties of TAR. Clinical and sociodemographic data were collected from 37 convulsive patients.Results: 1. The mean QOLIE-31 total score was 48.58±17.29 with the lowest subcomponent score 32.92±22.97 for Seizure Worry and the highest 77.11±20.98 for Medication Effects. Age, occupation, education, economic status, age at epilepsy onset and seizure frequency significantly correlated with low QOLIE-31 scores (p<0.05). Gender, marital status, duration were not factors that influenced quality of life (P>0.05).2.The lifetime prevalence was 2.5‰in TAR, and 94.59% cases were active epilepsy. Nearly 50% patients took traditional Tibetan treatment, and 97.1% patients with active epilepsy did not receive reasonable antiepileptic treatment medicine in the week before the survey (treatment gap).Conclusion: 1. Age, occupation, education, economic status, age at epilepsy onset and seizure frequency had influence on quality of life. Gender, marital status, duration were not factors that influenced quality of life.2.The prevalence rate was relatively lower than other rural regions, however the great treatment gap and poor quality of life indicated the extreme needs for medical resources. It was urgent to implement public health education and professional training to provide sustainable long-term medical services within the existing health care structures in TAR.更多还原