Abstract Details

Hispanic patients with epilepsy have multiple barriers to accessing care. Epilepsy folklore, the belief that epilepsy is caused by supernatural phenomenon, has been correlated with decreased anti-seizure medication adherence. Epilepsy folklore has not been studied as a barrier to care.

To determine the extent to which epilepsy folklore serves as a barrier for Hispanic patients with epilepsy to access neurologic care.

In this cross-sectional study, we identified adults who self-identified as Hispanic/Latino with a diagnosis of epilepsy, determined by an epileptologist at our center. Participants were approached during their scheduled visits with their epileptologist and consented to complete a unique survey available in Spanish and English. Study survey measures included assessment of belief in epilepsy folklore, barriers to healthcare, standard of care clinical data, Epilepsy Stigma Scale (ESS), and Medication Adherence Rating Scale (MARS). 30 patients (70% male, 30% female) were enrolled in the study. 

A total of 43.3% of all participants endorsed a belief in epilepsy folklore. A total of 13.3% of all participants indicated that a belief in folklore was an important or very important factor in their decision whether to establish care with a neurologist. Despite the prevalence, folklore belief did not appear to cause a delay in seeking care in those with or without it (Wilcoxon rank-sum test, p-value 0.3128, analysis was limited by small sample size). ESS score averaged 35.6 ±17.3 with top concern of “people treat me differently,” however stigma was not influenced by folklore belief (p-value 0.4225). The largest barrier to care in our survey was “lack of health insurance;" "stigma" was second.

While generalized conclusions cannot be made due to the small sample size, these findings suggest that a belief in epilepsy folklore is common in Hispanic patients with epilepsy, however, lack of insurance may be the largest barrier to care.