目的 了解全球抗癫(癎)运动中国农村抗癫阐示范项目终止后4年曾接受苯巴比妥治疗的癫(癎)患者的远期治疗效果及转归,以为我国农村癫(癎)患者的防治和管理提供参考依据.方法 2008年7-12月由经过培训的乡卫生院医师采用问卷与访淡相结合的形式入户调查,对原示范项目6省(市)共8个县经苯巴比妥治疗管理的2455例惊厥型癫(癎)患者进行随访.结果 接受苯巴比妥治疗的2455例患者中共随访到1780例,其中939例(52.75%)继续服药,无发作和发作减少超过50%(有效)的患者于项目终止后的12、24、36和48个月时所占比例分别为66.77%(627/939)、68.37%(642/939)、71.35%(670/939)和73.06%(686/939);841例(47.25%)停药患者中244例(29.01%)无发作、320例(38.05%)仍然发作但已停药、277例(32.94%)改用其他类型抗癫(癎)药物.对939例继续服用苯巴比妥与841例停药的癫(癎)患者进行疗效比较,继续服药者的远期疗效优于停药者(x2=12.423,P=0.002).停药原因分别为发作停止(244例,29.01%)、改用其他抗癫(癎)药物(277例,32.94%)、未提供免费药物或无钱买药(93例,11.06%)、治疗效果欠佳(92例,10.94%)、当地买不到苯巴比妥(54例,6.42%)等.至2008年随访结束时共有206例患者死亡,标化死亡比达19.10;其中意外事故死亡为59例(28.64%),其次为脑血管病30例(14.56%)、癫(癎)持续状态窒息死亡28例(13.59%).结论 "全球抗癫(癎)运动"中国农村癫(癎)示范项目开展成功,远期治疗效果良好,值得进一步推广.癫(癎)人群死亡率高,尤其是意外事故死亡率高,值得引起注意.%Objective To follow up the outcome of 2455 patients with epilepsy (the cohort) treated by phenobarbital (PB) during the WHO-Global Campaign Against Epilepsy Demonstration Project (GCAE/DP) in rural China after 4 years of its termination, to provide practical evidence for community control of epilepsy in rural China. Methods In 2008, the trained local township physicians, using a well-designed questionnaire, by door-to-door interview, followed up the cohort residents in 8 counties of 6 provinces where the GCAE/DP was conducted and completed for 4 years. Results One thousand seven hundred and eighty of the 2455 patients were visited in the follow-up study. Nine hundred and thirty-nine (52.75%) were still taking PB, the effectiveness rates (seizure free and seizure frequency reduced > 50%) among them at 12, 24, 36, 48 months after the GCAE/DP were 66.77% (627/939), 68.37% (642/939), 71.35% (670/939), 73.06% (686/939), respectively. In 841 patients (41.25%) who stopped taking PB, 244 cases (29.01%) were seizure free, 320 (38.05%) still had seizures but discontinued the treatment, 277 (32.94%) were treated by other antiepileptic drugs (AEDs). Chi - square test was used to compare the therapeutic effectiveness in 939 patients continuing taking PB and 841 patients abandoning PB. Patients continuing taking PB had a better outcome than patients abandoning PB (X2 = 12.423, P = 0.002). The main reasons of PB withdrawal were seizure free (29.01%), taking other AEDs (32.94%), no free drug or no money (11.06%), effect was not good or PB was not available (6.42%). Two hundred and six patients died between 2002 and 2008. The standardized mortality ratio (SMR) for the cohort was 19.10. The three leading causes of death were: accidents (n = 59, 28.64%), cerebrovascular diseases (n = 30, 14.56%) and status epilepticus (n = 28, 13.59%). Conclusion The GCAE/DP was successful and with long term good results, so it is worthy for further promotion. The mortality rate was very high in the people with epilepsy in this sudy, especially deaths from accidents, which should be noticed.
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