An Ethnographic and Structured Assessment of Treatment-Seeking Attitudes and Behaviors of People with Epilepsy in the Community

Introduction: Many people with epilepsy do not accept to the treatment. The reasons for this are not studied.

Aims: To explore factors associated with failure to access available health care treatments by people with epilepsy in an impoverished community in India.

Methods: We reached out to 143 people who were screened positive for epilepsy in door-to-door survey of 60,000 people; their sociodemographic character, outcome, and current status with 240 people who agreed to accept treatment. This was compiled by a structured as well as ethnographic assessment of attitudes of both groups.

Results: Of 143 patients, 29 had relocated, 25 were contacted by individual for assessment, and nine had died over 12 months. Epilepsy was confirmed in 48 (33.57%). Nonenrolled subjects were more likely to be ethnic Punjabi (p = 0.0001), unemployed (p = 0.020), had income < Rs. 5,386 (p = 0.006). In multivariate analysis, ethnic origin, family income, and other socio- economic status were completely associated with treatment acceptance; verbal autopsy findings on the nine people who died will be presented.

Conclusion: People with epilepsy who do not accept treatment are more likely to be of ethnic origin and from lower income strata. Failure to accept treatment is associated with high mortality.