Associates of Stigma in an Incident Epilepsy Population from Northern Manhattan, New York City

Background: We identified the incidence of epilepsy and first unprovoked seizure in the racially and ethnically diverse population of Northern Manhattan, an impoverished community. We analyzed the relationship between health status, lifetime depression and current feelings of stigma.

Methods: 209 children and adults were identified over a 1 year period and data abstracted from medical records. By design, a subset (n=135) of subjects was interviewed at baseline about various factors including lifetime history of depression, health status, medical history, and stigma, including feelings of inferiority, being avoided, and discomfort with others.

Results: 13.0% of patients reporting at least good current health experienced stigma versus 31.4% of those endorsing fair or poor health (p=0.02). 10.1% versus 17.7% felt uncomfortable (ns), 5.7% versus 25.5% felt inferior (p=0.002), and 8.6% versus 23.5% felt avoided (p=0.02). 52.9% of patients with depression experienced stigma versus 12.8% without depression (p=0.0001). Depressed patients were more likely than non-depressed to feel uncomfortable (35.3% vs. 7.0%, p=0.0009), inferior (44.4% vs. 8.1%, p<0.0001), and avoided (44.4% vs. 7.0%, p<0.0001). Burden of other comorbid medical conditions was unassociated with stigma.

Conclusions: Previous work by Jacoby (1,2) has revealed negative effects of prevalent epilepsy on stigma, social identity, and quality of life. In the low-income, predominantly Hispanic community of Northern Manhattan, we found that incident epilepsy may be associated with feelings of stigma when lifetime history of depression is present or current health status is fair or worse. Interventions are needed to prevent stigma in epilepsy, particularly among people with depression.