Mitigating treatment lag for infantile epileptic spasms syndrome in low- and middle-income countries: Key recommendations from the South Asia allied IESS research group

Document Type

Article

Department

Paediatrics and Child Health (East Africa)

Abstract

The World Health Organization (WHO) intersectoral global action plan (IGAP) aims to improve the quality of life and access to treatment for people affected by neurological disorders, including epilepsy.1 The goal is also to promote and optimize brain health across the lifespan. In that regard, infantile epileptic spasms syndrome (IESS) deserves special attention as the most common developmental and epileptic encephalopathy of infantile onset.Timely and appropriate treatment is crucial to achieve electroclinical remission and the best possible neurodevelopmental outcomes. The preferred treatment options include hormonal therapy in the form of adrenocorticotrophic hormone (ACTH), oral corticosteroids, and vigabatrin. Critical challenges of IESS management in South Asia and other low- and middle-income countries (LMICs) include a high disease burden, the long diagnostic lag, a major treatment gap, preponderance of structural etiologies, paucity of electroencephalographic (EEG) facilities and specialist care, the need for pragmatic etiological classification, lack of standardized management practices, limited availability of ACTH in the synthetic form and vigabatrin, and socioeconomic barriers faced by families. These circumstances create significant diagnostic and treatment delays, negatively impacting the clinical outcomes and quality of life of those affected

Publication (Name of Journal)

International League Against Epilepsy

DOI

https://doi.org/10.1111/epi.18090

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