The Global Epilepsy Needs Study (GENS): A mixed-methods, multi-country exploration of the unmet psychosocial and everyday needs of people with epilepsy

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.

Keywords: epilepsy; global health; mixed methods; psychosocial needs; quality of life; unmet needs.