Survey: Epilepsy Care for Children Living in Disadvantaged Countries Around the World

Epilepsy is one of the most common neurological disorders. It affects approximately 50 million people worldwide, with 80% of these individuals living in developing regions and an estimated rate of 139 new diagnoses per 100.000 in low- and middle-income countries per year (WHO 2022).

According to the Global Burden of the Disease study 2016, the highest prevalence was found in eastern, western, and southern sub-Saharan Africa regions, central Asia, central and Andean Latin America, and southeast Asia, with peak prevalence at 5–9 years and at older than 80 years.

Disparities in resources for the provision of epilepsy care in developed versus developing countries has been long been known. The World Health Organization (WHO) in cooperation with the International Bureau for Epilepsy (IBE) and the International League against Epilepsy (ILAE) published an Atlas on epilepsy care around the world for the first time in more than 15 years ago following a Global campaign to ‘improve acceptability, treatment, services and prevention of epilepsy around the world’ (WHO, 2005).

Inequities in epilepsy care provision initially delineated in that project have not much been improved as demonstrated by the most recent WHO Atlas on neurological disorders (WHO, 2019) care.

Although the need for immediate act was much highlighted in all these projects, discrepancies in epilepsy care are still in the center of global health policies and included in the recently approved Intersectoral Global Plan on epilepsy with five strategic objectives to be reached by 2031 (WHO, 2022).

• Epilepsy: a public health imperative. Geneva: World Health Organization; 2019
• Improving the lives of people with epilepsy: a technical brief: Geneva: World Health Organization; 2022
• Intersectoral global action plan on epilepsy and other neurological disorders 2022–2031: implementation toolkit. Geneva: World Health Organization; 2024.
• Improving access to medicines for neurological disorders. Geneva: World Health Organization; 2024

In this view, the project ‘Epilepsy care for children living in disadvantaged countries around the world’ has been developed within the activities of the Global Advisory Council of the ILAE and ILAE strategy plan 2030 document.

The strategy plan is, in general, inspired by the vision of achieving a world where no person’s life is limited by epilepsy. The access to quality and affordable health services is part of universal health coverage together with the acknowledgment of epilepsy as public health imperative and the development of the intersectoral Global Action plan on Epilepsy and Other Neurological Disorders (IGAP) by WHO.

The major driver is related to the huge unmet needs for children with epilepsy living in disadvantaged countries around the world. The main scope of this project is to bring light to:

• The Burden of Epilepsy in the Resource Limited World with focus on children
• The Availability of Resources for Epilepsy Care Provision in pediatric care settings
• The approaches that could lead to an effective Health Care Provision for epilepsy in children

The goal of this survey is to assess the needs of the target communities in collaboration with local experts and distribution in selected ILAE and IBE chapters on predefined topics (provision of resources in diagnosis and management). The survey will be conducted via an online platform.

We will distribute and collect surveys among community members, healthcare professionals, patient advocacy groups and leaders.

You can find the survey here. Deadline: 5 May 2025