Special session reviews goals, progress for advancing epilepsy research and care

Figure 1. Heat map of survey data on status of each ILAE region for selected targets from the Intersectoral Global Action Plan (IGAP) on epilepsy and other neurological disorders

J. Helen Cross

Francesca Sofia

Eugen Trinka

Samuel Wiebe

By Nancy Volkers, ILAE communications officer

Newswise — A special session at the American Epilepsy Society meeting in December 2023 attracted more than 70 attendees to review progress on the Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders (IGAP) and discuss strategies for moving forward.

ILAE President Helen Cross discussed progress toward IGAP targets (see box). This included preliminary results from a global survey conducted by the ILAE seeking information from country chapters as to current status against targets (Figure 1).

Including epilepsy in a national health care plan is particularly important, said Cross, as survey data show that governments with epilepsy in their national plans are significantly more interested in expanding epilepsy services, compared with governments that do not have a national plan that includes epilepsy.

Awareness programs and advocacy campaigns also are needed; survey data showed that some regions report that many countries do not have established programs. Cross said that collecting core epilepsy data is a particular challenge, as no more than 30% of countries in any region collect such data routinely.

International Bureau for Epilepsy (IBE) President Francesca Sofia spoke about understanding and addressing the needs and struggles of people with epilepsy globally. IBE’s main goal is to ensure that IGAP improves the quality of life of all people with epilepsy. To that end, understanding needs is crucial. IBE’s Global Epilepsy Needs Survey seeks to capture priority needs across geographical regions, different populations, and the life course. A report on the survey, expected near the end of 2024, will inform core policy, advocacy and research directives.

Eugen Trinka presented slides from ILAE Past President Samuel Wiebe about using care pathways and service delivery models to address the treatment gap. There are unique challenges in creating care pathways, due to the diversity of epilepsy types, causes, courses of illness, age groups, and management options. Varied settings and access to resources, as well as culture, health literacy, and social determinants of health, also play roles.

Despite these differences, Trinka noted that all people seeking treatment for epilepsy follow a similar path, which largely mirrors the stepped model of care presented in the 2019 Global Epilepsy Report:

Primary care (Level 1) from a primary health professional
Specialist care (Level 2) from neurology services
Comprehensive treatment (Level 3) at an epilepsy center

Epilepsy-related Targets of the Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders

75% of countries include epilepsy and other neurological disorders in national plans (Target 1.1)
100% of countries have an epilepsy awareness campaign or advocacy program (Target 1.2)
75% of countries include epilepsy as part of universal health coverage (Target 2.1)
80% of countries have access to essential anti-seizure medications and technology (Target 2.2)
80% of countries have an intersectoral health promotion and prevention program (Target 3.1)
Global prevention targets are met, as per previous WHO guidance (Target 3.2)
80% of countries routinely collect and report a set of core epilepsy data (Target 4.1)
100% increase (doubling) in research on epilepsy and neurological disorders (Target 4.2)
Countries increase epilepsy service coverage by 50% (Target 5.1)
80% of countries have reviewed legislation to ensure it protects the rights of people with epilepsy (Target 5.2)

Session attendees organized three breakout groups to discuss issues important to IGAP progress.

Best approaches to engage with government

This group emphasized that coordinated efforts that unite all stakeholders are crucial. They suggested utilizing WHO collaborating centres, which work with the World Health Organization (WHO) in specific areas, such as nursing, mental health, health technologies and chronic disease.

The group also highlighted that epilepsy-related data are crucial. Without evidence of the impact of epilepsy on individuals, families, and societies, governments are unlikely to work to effect change. Efforts also must demonstrate that the changes outlined in IGAP are cost effective and will improve quality of life. Studies on the costs of epilepsy—economic, social, and otherwise—are crucial to this effort. Access to care and disparities in care also are important. The group concluded that successful collaborations will include stakeholders who have personal contacts in government.

Barriers to accessing care

This group noted that most efforts to improve access to care are uncoordinated and unsustainable. Group members noted that many people may have access to care but do not trust the health system; therefore, they will avoid care altogether, or will not return for follow-up if they have a negative experience.

The group discussed how to measure appropriate epilepsy treatment. Group members suggested that ILAE produce a checklist of care quality indicators to address minimum standards for epilepsy care.

Group members also emphasized that neurologists in low- and middle-income countries (LMICs) may carry heavy care burdens, as they are often one of only a few specialists. This means they have little to no bandwidth to take on research or advocacy. The group agreed that education and training at all levels must be amplified and coordinated.

LMICs often lose aspiring neurologists and epileptologists to educational and employment opportunities in high-income countries; epilepsy specialists must join forces with other regional and international educational organizations to address the “brain drain.”

Intersectoral engagement

This group called for more research on the burden of epilepsy and disparities in care in order to provide an evidence base for policy changes. The group also agreed that a letter about IGAP from ILAE and IBE to national governments would likely make more of an impact.

There was discussion that advocacy work and lobbying should include groups representing other non-communicable diseases, as many have similar needs and there is complex interplay between many other conditions and epilepsy with examples given.

An IBE-led workshop was held in Chile in spring 2023 to discuss how to leverage policy frameworks for epilepsy advocacy in Latin America. Results showed that structures for multi-stakeholder advocacy require effective coordination and that existing community awareness initiatives need to be scaled up, particularly to rural areas. Updated intersectoral policies must reflect social determinants of health and address education, gender equity, and poverty. Across all aspects the involvement of people with epilepsy, as well as their families and care partners, is crucial.

“This session was highly productive,” said Cross. “There was great interest and ideas from many countries of the world as to how we may move forward in local implementation of IGAP. It was a great step toward meeting the targets set forth in the global action plan, such that by 2030 we can report increased diagnosis and treatment of epilepsy in countries around the world.”

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.

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