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

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.

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.

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.

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.