Improving Diagnosis and Management of Infantile-Onset Epilepsies in Resource-Limited Settings (SHIELD Model)

Infantile-onset epilepsies represent the most critical subset of all epilepsies, distinguished by peak incidence and disproportionately high morbidity and mortality. These encompass a heterogeneous group of epilepsy syndromes and often present with unusual and complex symptomatology. Their early onset signals a trajectory toward a lifelong burden of drug-resistant epilepsy, imposing a profound burden on health systems and society. While timely diagnosis and treatment are crucial to reduce morbidity and improve outcomes, resource-limited settings face significant systemic barriers. Despite fragmented epidemiological surveillance, converging evidence suggests a high burden of infantile epilepsies in resource-limited settings, driven by preventable perinatal brain injury, infectious contributors, and delayed recognition of epileptic spasms. The landscape of infantile-onset epilepsies in these settings is shaped by an intricate interplay of various factors, including burden, diverse clinical syndromes, underlying etiology, diagnostic challenges, treatment barriers, outcomes, and socioeconomic and cultural factors. The preponderance of structural etiologies, long treatment lag, large treatment gap, and associated social stigma largely define the relatively poor outcomes of infantile-onset epilepsies in these settings. This review outlines the current challenges and proposed solutions for managing infantile-onset epilepsies in resource-limited settings.