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Societal costs of illness for infantile epileptic spasms syndrome and evolutionary cost prediction in the era of WHO’s IGAP

Publication Type : Journal Article

Publisher : Elsevier BV

Source : Epilepsy Research

Url : https://doi.org/10.1016/j.eplepsyres.2023.107284

Keywords : IESS, West syndrome, Seizure, Epilepsy, Financial burden, Societal impact, ARIMA model, Time-series analysis

Campus : Faridabad

School : School of Medicine

Year : 2024

Abstract : Background To achieve the goal of improving the quality of life for persons with epilepsy within the framework of the WHO’s Intersectoral Global Action Plan (IGAP), our study aimed to assess the societal financial burden linked to infantile epileptic spasms syndrome (IESS), ensuring that children afflicted with IESS receive high-quality healthcare without enduring substantial financial constraints. Methods Between August 2022 and March 2023, 92 children with IESS (male: female: 2:1), recently diagnosed or previously followed-up, were recruited. We gathered costs for drugs, tests, and medical services, along with legal guardians’ monthly income. Total expenditure was determined by multiplying unit costs by the yearly service usage commencing from the onset. Time series analysis was utilised to forecast the financial burden from 2022 to 2032. Results Clinicians' first choice of treatment was ACTH (n = 60, 65·2%), prednisolone (n = 25, 27·2%), and vigabatrin (n = 7, 7·6%) and the median cost of treatment during the initial year was INR 39,010 [USD 479·2]. The median direct medical, direct non-medical, and indirect cost were INR 31,650 [USD 388·4], INR 6581 [USD 80·8], and INR 10,100 [USD 124·07], respectively. Families lost a median of 12 days of work annually. Drug costs and loss of wages were the key factors in the financial burden. The projected and adjusted figures exhibited an incremental growth rate of 2·6% tri-annually. Interpretation This pioneering study in developing countries, the first of its kind, evaluates the societal cost, financial hardship, and trajectory of incremental cost in IESS. The primary drivers of the financial burden were pharmacological treatment and family work adjustments. The government shoulders 62% of the financial burden, and projected a triannual growth of 2·6% from 2022 to 2032. Our results rationalize policymakers' focus on incorporating IESS into social security programs, particularly in developing countries.

Cite this Research Publication : Saroj Kundan Bharti, Ishneet Gupta, Akshima, Priyanka Madaan, Nagita Devi, Pooja Dhir, Sandeep Negi, Naveen Sankhyan, Jitendra Kumar Sahu, Dipika Bansal, Societal costs of illness for infantile epileptic spasms syndrome and evolutionary cost prediction in the era of WHO’s IGAP, Epilepsy Research, Elsevier BV, 2024, https://doi.org/10.1016/j.eplepsyres.2023.107284

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