Newswise — The Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) aims to shrink epilepsy diagnosis and treatment gaps across the world by 2031. Many in the epilepsy community are asking, “How do we go about improving access to care?”
There will be no single, simple solution that can be applied across all countries; approaches must be tailored to each country’s needs and resources. Examples of how others are solving these problems can be useful. This article outlines China’s efforts over the past two decades, providing a window into strategies and steps used to improve epilepsy care across the nation.
During the Seino Memorial Lecture at the ILAE Asian-Oceanian Congress in November 2022, Professor Shichuo Li described how epilepsy care in China has evolved in the last 20 years with a focus on China’s comprehensive governance for epilepsy prevention, diagnosis, and treatment.
Li, who is the founding president of the China Association Against Epilepsy (CAAE) and a former Assistant Director General of the World Health Organization, summarized the efforts by saying, “Leadership and governance are critical levers for addressing the challenges that people with epilepsy are facing, and to improve care and support for people with epilepsy.”
Epilepsy in China
China’s efforts began more than two decades ago. In 2000, China’s Ministry of Health and WHO together with the ILAE and IBE began a four-year demonstration project focused on epilepsy management in primary care in six provinces. At the time epilepsy was highly stigmatized (its name was “mad pig disease”), and data suggested that it was greatly underreported and undertreated.
The project was designed to develop better information on the prevalence of epilepsy in these provinces and the number of people who were undergoing treatment, as well as to improve knowledge about epilepsy in the health care workers and the community. Key activities included epidemiological surveys, a phenobarbital treatment intervention and educational programs. Phenobarbital was chosen because it fit best into the cost limitations of the program.
The steps in the demonstration project:
- 2000 – The first door-to-door epidemiological survey takes place. Results estimate a lifetime epilepsy prevalence of 7.0/1,000 people and an active epilepsy prevalence of 4.6/1,000 people. The treatment gap was estimated at 62.6%.
- 2000-2001 – Primary care physicians in the six provinces, including all physicians who will participate in the intervention, are trained in the diagnosis and management of epilepsy.
- 2001 – An educational program is released across the six provinces through television and newspapers. Lectures and group discussions are held for people with epilepsy and their families. Community leaders and teachers are provided with information about epilepsy, its causes, and its treatment. All communications encourage people with seizures to take part in the treatment intervention.
- December 2001 – June 2004 - The treatment intervention takes place. Clinics at local health centers offer free assessment and free treatment with phenobarbital, including regular follow-up and dose adjustments. The intervention includes 2,455 people. At 12 months of follow-up, 68% had at least a 50% reduction in seizures, and one-third were seizure free (see graphic).
- September – December 2004 – The second survey is done. This survey yields a lifetime prevalence of 6.2/1,000 people and an active epilepsy prevalence of 4.5/1,000 people. The treatment gap in this survey was 49.8%, 12.8% lower than that of the first survey. The availability of treatment played a major role in reducing the treatment gap. Also, the cost of providing medical care to these patients once they were on phenobarbital was reduced to less than 20% of what it had been before they began treatment.
- 2005: In response to the encouraging results of the demonstration project, the Ministry and CAAE developed a model of epilepsy management for rural areas that began in 2005. As of 2021, 312 counties had joined the project, identifying more than 200,000 people with epilepsy. About 80,000 people have received no-cost phenobarbital or valproate through the project, which had annual costs of USD $5.8 million in 2021.
China Association Against Epilepsy
In 2002, with the demonstration project under way, the China Association Against Epilepsy (CAAE) was formed by neurologists, neurosurgeons, and other interested professionals. The group was approved by the Ministry of Health in 2004 and became an ILAE chapter. The CAAE is registered in the Ministry of Civil Affairs as an independent social organization and is supervised by the National Health Commission. Maintaining close communications with various branches of government and governmental offices is a key function of the association.
A key aim of IGAP is to increase the number of health care professionals who can diagnose and treat epilepsy and other neurological disorders.
China does not offer certification for epileptologists through national health agencies, but there is a need to evaluate the quality of epileptologist training at the epilepsy centers. To ensure that there are knowledgeable epilepsy health professionals, the CAAE created a five-month training course in epileptology in 2020, including tests for level 1 (entry) and level 2 (proficiency). Eighty-seven trainees have passed level 1, and 505 passed level 2. CAAE plans to continue this training in future years.
CAAE holds annual EEG technician training and proficiency testing in collaboration with the National Medical Examination Center. Training includes a six-month online course, a three-day in-person course, and a computerized exam. Between 2013 and 2020, more than 2,300 people participated in the training, with 80% passing exams.
To improve care standards for epilepsy in the country, the CAAE has proposed a consortium of epilepsy centers to promote coordination and collaboration. There are more than 350 epilepsy centers in the nation, most in tertiary hospitals. This concept includes plans to create a platform to collect and organize data on a national level, allowing for “big data” research and analysis.
CAAE has emphasized that creating these centers on a national level will enhance epilepsy research in multiple areas, including brain science, public health aspects, precision medicine and genetics, and artificial intelligence technology. This advocacy has resulted in increased funding for epilepsy-related research through the National Natural Science Foundation.
Awareness and education at a national level
Since 2007, China has celebrated International Epilepsy Caring Day on 28 June. The CAAE Bureau for Epilepsy (CBE) establishes a theme for each year, organizes activities, and maintains a website with resources about epilepsy awareness and education.
As part of the awareness efforts, the CAAE “Going West” project sends CAAE Youth Commission members to the economically underdeveloped western region of China to conduct primary-care physician training courses and grand rounds, as well as to provide free patient consultations and educational sessions. Between 2013 and 2020, this project trained nearly 12,000 physicians and helped 21,000 patients in 25 provinces. Other training projects have increased the education and awareness of epilepsy among pediatricians, neurologists, and neurosurgeons.
Progress through commitment
The experience in China shows that making the effort to reduce the burden of epilepsy successful requires input and commitment from a wide range of stakeholders. Health care agencies at local, regional, and national levels must commit to developing strategic policy frameworks that recognize the needs of people with epilepsy.
Addressing the treatment gap also requires funding, protective legislation, and changes in health policies. Li noted that CAAE has worked to address the treatment gap through these areas for the past two decades and will continue to do so in the foreseeable future.
“The comprehensive governance of epilepsy prevention and control in China is an example of the strategic working style for epilepsy care and prevention on a national level,” said Li. “China’s experience may prove to be a successful blueprint for other countries. However, which parts and to what extent those parts could be adopted by other countries must be based on their individual situations.”
Founded in 1909, the International League Against Epilepsy (ILAE) is a global organization with more than 125 national chapters.
Through promoting research, education and training to improve the diagnosis, treatment and prevention of the disease, ILAE is working toward a world where no person’s life is limited by epilepsy.