Treatment gap in epilepsy is predicted more by patient perceptions than disease burden: Population-based study from rural India.

OBJECTIVE: To identify predictors of primary and secondary epilepsy treatment gap (TGap) in a rural Indian community. METHODS: We conducted a community-based door-to-door survey of 130 509 individuals in 96 villages in rural Gujarat, India. Active epilepsy was diagnosed by neurologists using standard definitions and reasons for TGap were recorded. Primary TGap was defined as never receiving anti-seizure medication (ASM) and secondary TGap as discontinuation of ASM after initiation. Clinical characteristics, healthcare utilization, patient perceptions, and quality of life-31 (QOLIE-31) were assessed. Multivariable logistic regression was performed to identify factors associated with TGap. Through a pragmatic intervention, we provided free ASM to untreated patients to evaluate long-term treatment retention. RESULTS: We identified 393 people with active epilepsy (prevalence 3.01 per 1000; 95% confidence interval [CI]: 2.72-3.32). Of 371 patients with treatment data, 247 (66.6%) had TGap, 127 (34.2%) primary and 120 (32.3%) secondary. Primary TGap was mainly attributed to lack of awareness and low perceived need for treatment (56%), whereas perceived cure was the leading reason for secondary TGap (35%). Financial and access barriers accounted for only 19% of reported reasons. Younger age, shorter epilepsy duration, higher seizure frequency, and lack of neurologist consultation were associated with TGap on univariable analysis. After adjustment, perception-related variables, namely unawareness regarding ASM side-effects, healthcare disengagement, faith-healing beliefs, and preference for non-specialist care, were found to be independent predictors of primary TGap. Patients with primary TGap had the poorest quality of life. Among 94 untreated patients offered free ASMs, only 32 (34.0%) remained in care at 3 months and 17 (18.1%) at 1 year. SIGNIFICANCE: Primary and secondary TGap represent distinct entities and need different solutions. Rather than seizure disability or quality of life, patient perceptions and healthcare beliefs best predict treatment initiation. Improving ASM access alone is unlikely to substantially reduce the TGap.