Referral to an Apex Tertiary Center in Pediatric Epilepsy: A Prospective Cost-of-Illness Study

Abstract Background: Epilepsy is one of the most common chronic neurological disorders in children, and it poses a significant public health burden in low and middle-income countries. Despite its high prevalence, there is little evidence of the economic burden of pediatric epilepsy in India, particularly in terms of direct and indirect expenditures. Materials and Methods: This prospective study enrolled 385 children with epilepsy aged 1 month to 18 years at AIIMS Jodhpur from January 2024 to June 2025. Cost data were gathered through caregiver interviews during their first visit and 6-month follow-up using a structured questionnaire. Costs were categorized into direct medical, direct non-medical and indirect costs. The cost analysis was conducted from a societal perspective. Results: Referrals to the apex tertiary center resulted in lower consultation, hospitalization and investigation costs; nevertheless, the introduction of standardized treatment regimens led to an increase in medication costs. Total direct medical cost decreased significantly after referral, from a median of Rs 20,600 (12,300–31,500) [USD 235.3 (156.6–359.8)] to Rs 13,510 (9212.5–20,400) [USD 154.3 (105.2–233)]. Food and accommodation costs decreased, but non-medical travel costs increased. Total direct non-medical cost did not differ significantly between periods, with medians of Rs 4800 (1200–11,460) [USD 54.8 (13.7–130.9)] before referral and Rs 6000 (2400–10,590) [USD 68.5 (27.4–121)] after referral. Mothers experienced greater production losses as compared to fathers. Conclusion: Pediatric epilepsy causes a significant economic and social hardship on families. Referral to an apex tertiary center alters expenditure patterns, indicating a shift from fragmented care to structured management, with substantial implications for household costs and social functioning. These findings highlight the complex trade-offs between better clinical care and out-of-pocket costs in resource-constrained settings.