Abstract Objective While epilepsy research has largely focused on medical management and clinical outcomes, less attention has been given to the unmet psychosocial and everyday needs of people with epilepsy (PWE), particularly in low‐ and middle‐income countries. The Global Epilepsy Needs Study (GENS) aims to explore these needs, which are integral to the quality of life, by capturing both shared and context‐specific experiences. Methods The GENS employed a patient‐centered approach and mixed‐methods design, integrating a cross‐sectional survey and semi‐structured interviews in 15 countries. The survey, available in 12 languages, captured experiences across 10 life domains (n = 5296 participants). Interviews were analyzed thematically using a phenomenological approach and Colaizzi's method, exploring lived experiences in depth (n = 75 participants). To ensure meaningful involvement and diverse representation, national patient associations, healthcare professionals, researchers, and people with lived experience guided each stage of the research process, from study design to manuscript development. Results Quantitative and qualitative data were integrated using a joint display method. This analysis generated five Generalized Themes across all life domains: (1) managing uncertainty and redefining daily life; (2) living with risk, social exclusion, and misunderstanding; (3) challenges in navigating inaccessible systems; (4) consequences of inaccessible or inadequate information; and (5) complex epilepsy needs demand more than standard approaches. Significance This first‐of‐its‐kind global study offers a comprehensive picture of the psychosocial and everyday challenges faced by PWE. It establishes a critical evidence base for epilepsy organizations, highlights the need for healthcare systems to adopt holistic, multidisciplinary approaches, and calls on policymakers to invest in systemic reforms that safeguard dignity, inclusion, and life opportunities. Future research should explore the needs of underserved groups, including caregivers, individuals with complex epilepsy, women, and those in low‐income or rural settings. Plain Language Summary This study examined the everyday challenges faced by people with epilepsy in different parts of the world. It showed that many people struggle with fear, stigma, poor access to services, and a lack of clear information and support. Women, people in rural areas, and those in low‐income settings often face the greatest challenges. The study calls for better education, more support for caregivers, and improvements across health, work, school, and transport systems. It also shows the need for more research to understand and respond to the real‐life needs of people most impacted by epilepsy.
J.H.C. has acted as an investigator for studies with GW Pharma/Jazz Pharmaceuticals, Zogenix/UCB Pharma, Vitaflo, Stoke Therapeutics, and Ultragenyx. She has been a speaker and on advisory boards for Jazz Pharmaceuticals, UCB, Biocodex, and Nutricia; all remuneration has been paid to her department. She holds an endowed chair at UCL Great Ormond Street Institute of Child Health; she holds grants from National Institute of Health Research (NIHR), EPSRC, GOSH Charity, ERUK, the Waterloo Foundation, and the NIHR Biomedical Research Centre at Great Ormond Street Hospital. J.W. (Jo Wilmshurst) is an associate editor for Epilepsia, chief editor of the Pediatric Neurology subsection of Frontiers in Neurology, and on the South African national advisory board for Sanofi, Novartis, and Roche. The remaining authors have no conflicts of interest. We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines. All important data related to the article are given within the article. Table S1. Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.
A variety of terms, such as "antiepileptic," "anticonvulsant," and "antiseizure" have been historically applied to medications for the treatment of seizure disorders. Terminology is important because using terms that do not accurately reflect the action of specific treatments may result in a misunderstanding of their effects and inappropriate use. The present International League Against Epilepsy (ILAE) position paper used a Delphi approach to develop recommendations on English-language terminology applicable to pharmacological agents currently approved for treating seizure disorders. There was consensus that these medications should be collectively named "antiseizure medications". This term accurately reflects their primarily symptomatic effect against seizures and reduces the possibility of health care practitioners, patients, or caregivers having undue expectations or an incorrect understanding of the real action of these medications. The term "antiseizure" to describe these agents does not exclude the possibility of beneficial effects on the course of the disease and comorbidities that result from the downstream effects of seizures, whenever these beneficial effects can be explained solely by the suppression of seizure activity. It is acknowledged that other treatments, mostly under development, can exert direct favorable actions on the underlying disease or its progression, by having "antiepileptogenic" or "disease-modifying" effects. A more-refined terminology to describe precisely these actions needs to be developed.
Neurological conditions are the leading cause of death and disability combined. This public health crisis has become a global priority with the introduction of WHO's Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders 2022-2031 (IGAP). 18 months after this plan was adopted, global neurology stakeholders, including representatives of the OneNeurology Partnership (a consortium uniting global neurology organisations), take stock and advocate for urgent acceleration of IGAP implementation. Drawing on lessons from relevant global health contexts, this Health Policy identifies two priority IGAP targets to expedite national delivery of the entire 10 -year plan: namely, to update national policies and plans, and to create awareness campaigns and advocacy programmes for neurological conditions and brain health. To ensure rapid attainment of the identified priority targets, six strategic drivers are proposed: universal community awareness, integrated neurology approaches, intersectoral governance, regionally coordinated IGAP domestication, lived experience-informed policy making, and neurological mainstreaming (advocating to embed brain health into broader policy agendas). Contextualised with globally emerging IGAP-directed efforts and key considerations for intersectoral policy design, this novel framework provides actionable recommendations for policy makers and IGAP implementation partners. Timely, synergistic pursuit of the six drivers might aid WHO member states in cultivating public awareness and policy structures required for successful intersectoral roll-out of IGAP by 2031, paving the way towards brain health for all.
In a historic vote, the World Health Organization (WHO)'s 194 Member States unanimously adopted the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders 2022–2031 (IGAP), committing to "reduce the stigma, impact and burden of neurological disorders, […] and improve the quality of life of people with neurological disorders, their carers and families" [1]. While calling on Member States to strengthen the public health approach to epilepsy, as a specific strategic objective – which will be explored further below – IGAP takes a multipronged, person-centered, human rights, and life course approach to brain health and all neurological conditions.
This commentary is on the original article by Cohen et al. on pages 957–964 of this issue.
2022 marks an exceptional year for the global epilepsy community. Following over two decades of intensive global advocacy efforts at all levels [1], the 194 member states of the World Health Assembly unanimously adopted the World Health Organization (WHO) Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders 2022 – 2031 (IGAP) [2]. With five strategic objectives and 10 global targets, IGAP's declared 10-year goal is to "reduce the stigma, impact and burden of neurological disorders, including their associated mortality, morbidity and disability, and to improve the quality of life of people with neurological disorders, their carers and families" [2].