EPILEPSY EDUCATION AND TREATMENT PROGRAM IN

A PROMISING STRATEGIES PROJECT Set up in 2006, as a way of supporting IBE chapters through the provision of financial support for projects aimed at improving the quality of life of people with epilepsy, to date, 81 projects in 38 countries have received a total of US$330,000 in support.

For centuries has served as the last out- post before the wild Tibetan mountains and passes of the -Lhasa highway. It has been acting as the bridge between Han and Tibetan cultures and as a major trading port on the . Our team members are from Chengdu and Kangding and, once again, we want to act as a bridge of knowledge ex- change, and proper epilepsy management, with the help of IBE. The Tibet region is on the Qinghai-Tibet- medical workers. illiteracy rate in . Our previous study an plateau, which is about 4,000 metres 2. Education in local communities. showed the epilepsy treatment gap to be above sea level. Over 3 million Tibetan a high as 97%. And 60% of people will people live in an extremely harsh natural 3. Treatment, data collection and analy- choose traditional Tibetan medicine [1,2]. sis, and follow-up. environment on this high plateau. Few TARGETED POPULATION qualified neurologists work in the area. With the help of CDC and the govern- Our previous study showed the prevalence ment, a network for education, control, General doctors and patients are the rate of active epilepsy to be 2.4 (95% CI and screening of Hydatidosis (Echino- targeted population. There is an urgent = 1.7–3.3) per 1,000 in the Tibet Autono- coccosis) and other chronic diseases has need to train the local general doctors in mous Region. And 97% of patients with already been built and has worked well in proper epilepsy control; to educate people active epilepsy did not receive antiepileptic Ganzi's villages and counties [3]. By using with epilepsy to adhere to appropriate therapy [1,2]. As a result, medical, edu- the already existing network, after the start treatment; and increase public awareness cational and financial support is urgently of the project, we want to provide those of epilepsy. needed to bridge the treatment gap in services and epilepsy screening in all 18 One million people live in Ganzi. Our Tibet. counties of Ganzi. previous study showed the prevalence rate The Ganzi Tibetan Members of our team have helped in of active epilepsy to be 2.4 (95% CI = is part of the Tibet area and Tibetan setting up a management network, based 1.7–3.3) per 1,000 in Tibet Autonomous dialect is the primary language. on the primary health care system in rural Region. So there would be 2,400 people with epilepsy and 90 (18x5) general doc- ORGANIZATION areas of Province, and have carried out door to door epilepsy screening in tors in county hospitals. Ganzi People’s Hospital is located in the Tibet[1,4]. We believe city of Kangding, Sichuan Province, in a those experiences will be valley of the , about 210 helpful in this Tibetan kilometers west-southwest of Chengdu. project. Since 2014, each year West China Hospi- Medical resources are tal has sent a neurologist to Kangding, to very insufficient in the live and work with the local doctors for Ganzi Tibetan Au- twelve months. A neurologist, nurse and tonomous Prefecture. At Kham Tibetan dialect translator from West county-level, hospitals China Hospital and Ganzi People’s Hospi- have only 3 to 5 doctors, tal work together on the project. With the and only one with a staff, we plan an epilepsy education and practitioner's license. treatment program in Kangding city. We People living in Tibet Photo of our staff in front of Ganzi People’s Hospital with the have already provided services such as: have the shortest life project manager, Jiani Chen (back row, second from left), The 1. Continuous training for local primary expectancy and highest road in the background is part of the ancient Tea Horse Road, and the mountain in this photo is the gateway to Tibet. 4. Treatment Gap. Calculation formula: proper management rate = proper management of the number of PWEs / the number of PWE × 100%. Treat- ment Gap=1- proper management rate PROJECT SUSTAINABILITY There is a rural areas education and control project for epilepsy in Sichuan province. Each year that project will provide support to 7-8 counties in Sichuan and will last for 2-3 years then shift support to other ANTICIPATED IMPACT OF THE in epilepsy screening, diagnosis and counties. PROGRAM treatment for local primary health This project will be continued by support 1. Provide information on prevalence, workers. from the project for rural areas after it knowledge level, and treatment gap 2. Treatment, follow-up, and patient finishes supporting other counties[4]. of epilepsy in the population of Ganzi education for better epilepsy con- References for further studies. trol. As Ganzi People’s Hospital is 1. Zhao Y, Zhang Q, Tsering T, Sang- the only hospital has neurologists, 2. Through the training program, wan, Hu X, Liu L, et al. Prevalence of MRI and EEG in this area, a referral improve diagnosis and treatment in convulsive epilepsy and health-related system between local hospitals and county-level hospitals of Ganzi. quality of life of the population with Ganzi People’s Hospital will be set up. convulsive epilepsy in rural areas of 3. Promote better understanding and Follow-up will be carried out by local Tibet Autonomous Region in China: management of epilepsy in people health workers. They help patients An initial survey. Epilepsy & Behavior. with epilepsy for long-term epilepsy learn more about epilepsy and explain 2008 Apr;12(3):373–81. control. the rationale and potential benefits POTENIAL OBSTACLES of treatment, which might enhance 2. Zhao Y-H, Zhang Q, Long N, Yang C, Hong J, Mu L, et al. Prevalence 1. Transportation: driving on the highest compliance. Epilepsy patient data will of epilepsy and alcohol-related risk plateau on earth could be a challenge, be recorded using our online database. in Zayul County, Tibet Autonomous but Ganzi hospital would assist our 3. Providing education in local commu- Region in China: An initial survey. team with their experienced local nities to promote a better understand- Epilepsy & Behavior. Elsevier; 2010 drivers. ing of epilepsy. We will translate epi- Dec;19(4):635–8. 2. Cooperation of the local hospital, lepsy handbooks into Kham Tibetan 3. Ganzi Goverment. the report for CDC and the government: a network dialect and promote general awareness medical system reform [Internet]. [cited for education, control and screen- of epilepsy in local communities. 2016 Nov 28]. Available from: http:// ing of hydatidosis and other chronic ASSESSING EFFECTIVENESS www.gzz.gov.cn/10000/10011/10012/1 diseases has already been built and The effectiveness of this education and 0015/2015/07/29/10481707. shtml worked well in Ganzi[3]. Doc- control program would be measured by 4. Hu J, Si Y, Zhou D, Mu J, Li J, Liu tors from Ganzi People's Hospital pre-post knowledge changes. regularly go to counties and villages L, et al. Prevalence and treatment gap to undertake chronic illness control. The questionnaire used to measure educa- of active convulsive epilepsy: a large Thus we could use this network. tion effectiveness is the KAP questionnaire community-based survey in rural West [5] for PWEs and locales, and the epilepsy China. Seizure. 2014 May;23(5):333–7. 3. Continuous participation of local doc- knowledge questionnaire for doctors[6]. 5. Radhakrishnan, K., Pandian, J. D., tors: In our previous rural area project All these questionnaires were translated Santhoshkumar, T., Thomas, S. V., in Sichuan province, we found that it into Chinese. would be a problem to make the local Deetha, T. D., Sarma, P. S., ... & Mo- doctors perform continuous recording The questionnaire would be gathered hamed, E. (2000). Prevalence, knowl- and follow-up of people with epilepsy, before and after lectures to see the changes edge, attitude, and practice of epilepsy in thus in this project. We plan to offer in epilepsy knowledge. Kerala, South India. Epilepsia, 41(8), them a small bonus as an incentive. OUTCOME MEASURES 1027-1035. OBJECTIVES AND BUDGET The project will be measured by 6. Jarvie S, Espie C A, Brodie M J. The development of a questionnaire to as- The objectives of this project are three-fold. 1. The numbers of local health care sess knowledge of epilepsy: 1—general physicians trained. 1. Continuous training for local primary knowledge of epilepsy[J]. Seizure, 1993, medical workers to enhance diagnosis. 2. The numbers of epilepsy patients 2(3): 179-185. During 2017, the doctors from West screened and educated. China Hospital and Ganzi People’s 3. Prevalence of epilepsy in Ganzi Tibet Hospital will visit regularly all 18 area. Calculation formula: number of counties in Ganzi to provide training PWE/population size × 100%