Individual and relational factors related to disclosure of epilepsy in the workplace

The decision to disclose epilepsy in the workplace is complex, as it entails both advantages and disadvantages. In this study, we aimed to identify the factors associated with disclosure of epilepsy in the workplace based on the disclosure decision-making model for patients who required underwent comprehensive assessment in the Epilepsy Monitoring Unit (EMU).

This retrospective study included 193 patients with epilepsy (112 men, aged 18-66 years) who underwent comprehensive assessment, including long-term video-EEG monitoring, neuroimaging studies, and neuropsychological and psychosocial assessment in the Tohoku University Hospital EMU. Data were obtained from the medical records and self-reported questionnaires at our EMU. The outcome variable was disclosure of epilepsy. Predictive variables were selected based on the disclosure decision-making model: individual factors (i.e., age, sex, age at onset of epilepsy, seizure frequency, generalized tonic-clonic seizures or focal to bilateral tonic-clonic seizures in the last 2 years, experiences of viewing own seizure, and felt stigma), and relational factors (i.e., experiences of discrimination, enacted stigma, and social support). Data were analyzed using a logistic regression analysis model.

Our results indicated that 43.5% of patients disclosed epilepsy to their employer. The factors that associated with disclosure of epilepsy were experiences of discrimination (odds ratio [OR], 7.78; 95% confidence interval [CI], 2.84-21.34, p < 0.01), experiences of viewing own seizure (OR, 3.51; 95% CI, 1.27-9.72, p < 0.05), and level of enacted stigma (OR, 0.69; 95% CI, 0.48-0.99, p < 0.05).

This study indicated that the decision to disclose epilepsy was associated with both individual factors, such as experience of viewing own seizures, and relational factors, such as experience of discrimination and enacted stigma.