The operational model of a network for managing patients with convulsive epilepsy in rural West China Ling Liu a , Qin Zhang a , Zhiping Yao a , Xiaowen Wang b , Cairong Zhu b , Yali Gao c , Jun He c , Zhuo Wang c , Ningmei Zhang c , Wendyl D’Souza d , Dong Zhou a, * a Department of Neurology, West China Hospital, Sichuan University, Chengdu, Sichuan, People’s Republic of China b West China School of Public Health, Sichuan University, Sichuan, People’s Republic of China c Sichuan Center of Disease Control and Prevention, Sichuan, People’s Republic of China d Department of Medicine, University of Melbourne, St. Vincent’s Hospital Melbourne, Melbourne, Australia article info Article history: Received 4 August 2009 Revised 17 September 2009 Accepted 12 October 2009 Available online 11 November 2009 Keywords: Network Convulsive epilepsy Phenobarbital Primary health care Rural areas abstract Objective: To establish an operational model of a network for managing patients with convulsive epilepsy in rural areas of West China. Methods: The network is under unified leadership of the public health administration departments, who liaised with medical institutions and disease control and prevention organizations to foster local commu- nities to participate. Patients with convulsive epilepsy were treated with phenobarbital. Trained local pri- mary health care physicians carried out screening, treatment, and follow-up. Political, financial, and technological support was incrementally provided through the network. Efficacy was assessed as the per- centage reduction in seizure frequency and the retention of patients on treatment. Results: Two thousand five hundred fourteen patients with active convulsive epilepsy were enrolled. After more than 1 year of treatment, 78.4% of the patients had a 50% or greater reduction in seizure fre- quency and 43.3% remained seizure free. Probability of retention was 85.8% at 750 days. Nearly 20% patients withdrew from the project, and most of them migrated out of the study areas. Some regular training and educational programs were also carried out. Conclusion: This pragmatic procedure suggests that the network could be suitable for managing convul- sive epilepsy in resource-poor regions. Such a network could depend on existing primary health services to ensure its sustainability. Ó 2009 Elsevier Inc. All rights reserved. 1. Introduction Epilepsy is one of the most common chronic neurological dis- eases. An estimated 50 million people worldwide have epilepsy, and more than 80% are either inappropriately treated or not trea- ted at all; most of these people live in resource-poor countries [1]. In China, the prevalence of epilepsy has been estimated to be 7.0 per 1000 and there are nearly 9 million people with epilepsy (PWE). About 41% of patients have never received appropriate treatment in rural areas, with a treatment gap of 63% for active epi- lepsy [2]. Epilepsy imposes enormous physical, psychological, so- cial, and economic burdens on individuals and their families, exacerbated by centuries of misunderstanding, fear, and social exclusion [3]. It constitutes a major public health problem all over the world, particularly in resource-poor regions, where most PWE live, and where financial, informational, and transportation con- straints limit the availability of treatment. In 1997, the World Health Organization (WHO), in cooperation with the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE), launched the Global Cam- paign Against Epilepsy (GCAE) to bring epilepsy ‘‘out of the shad- ows” [1]. As an important part of the campaign, a demonstration project on epilepsy management was carried out in rural China. This project was aimed at providing accessible, effective, and affordable therapy for patients with convulsive epilepsy in rural China. After phenobarbital (PB) monotherapy for nearly 2 years, 72% of 2455 patients had a 50% or greater reduction in seizure fre- quency and 25% of patients remained seizure free. Probability of retention was 0.76 at 2 years. PB treatment was well tolerated and its cost was low [4]. In 2005, the Chinese government decided to extend the project to more rural areas. Similar to the demonstration project, the ex- tended project was aimed at (1) training and educating local health care physicians; (2) improving the diagnosis, treatment, and pre- vention of epilepsy in resource-poor regions; (3) raising general 1525-5050/$ - see front matter Ó 2009 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2009.10.013 * Corresponding author. Address: Department of Neurology, West China Hospital, Sichuan University, Chengdu, Sichuan 610041, People’s Republic of China. Fax: +86 28 8542 2549. E-mail address: zhoudong66@yahoo.de (D. Zhou). Epilepsy & Behavior 17 (2010) 75–81 Contents lists available at ScienceDirect Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh