Abstracts

Rationale: Stigma poses a significant burden on patients, leading to illness exacerbation, healthcare avoidance, depression, and poor quality of life. Although 77-87% of patients with non-epileptic seizures (NES) report feeling stigmatized, the magnitude and impact of stigma on patients with NES has not been fully investigated. We aim to characterize perceived, experienced, and internalized stigma in a sample of patients with NES and evaluate the response of stigma levels to current interventions for NES.

Methods: This is an ongoing prospective cohort study that uses convenience sampling among patients referred to our NES Clinic for care. Stigma was measured with three metrics. The Epilepsy Stigma Scale (ESS) measured both perceived and internalized stigma, the Internalized Stigma of Mental Illness (ISMI-9) measured internalized stigma, and the Stigma Scale of Chronic Illness (SSCI-8) measured both internalized and experienced stigma. Metrics were administered before and after a 6-week standard of care treatment program for NES. Summary statistics were calculated to describe the sample at baseline. One-sample t-tests compared scales to neutral scores. Paired t-tests compared scores on each of the measures at baseline and follow up. Pearson correlations assessed associations among score changes at baseline and follow up.

Results: Of the 44 patients who submitted baseline metrics, 22 completed the 6-week treatment program and provided follow up metrics. The remaining patients were either undergoing treatment or awaiting treatment. At baseline, 75% of patients felt some level of internalized stigma on the ISMI-9. On average, patients reported moderate internalized stigma, and 45.5% of all patients reported severe internalized stigma. On the ESS, patients reported a mean total score 4.9, SD 1.4; internalized mean score 4.9, SD 1.6; perceived mean score 4.9, SD 1.4, which were higher than the literature-defined neutral score of 4 (p< 0.001). On the SSCI-8, sample mean score 24.8, SD 7.9 converted to a T-score of 61.6, which was one standard deviation above the average score of a clinical reference population. At follow up, mean ISMI-9 score decreased marginally (mean difference -0.2, p=0.06). This decrease in internalized stigma was associated with decreased scores on total ESS (r=0.5, p=0.02), internalized ESS (r=0.4, p=0.04), perceived ESS (r=0.4, p=0.04), and SSCI-8 (r=0.7, p< 0.001).