Impact of stigma on the quality of life of patients with refractory epilepsy

PURPOSE To assess the impact of perceived stigma on the quality of life of Bulgarian patients with refractory epilepsy. METHODS We studied 70 adult patients with refractory epilepsy, without cognitive impairment, progressive somatic, neurological disease or recent seizures, and 70 patients with pharmacosensitive epilepsy. All participants completed a 3-item stigma scale, the patients with refractory epilepsy also completed a Health Related Quality of Life measure (the QOLIE-89). RESULTS The patients with refractory epilepsy had a mean disease duration 25.1±1.3 years. 40.0% of patients (±5.9) had symptomatic epilepsy. Seventeen patients (24.2%±5.1) had partial seizures, 16 (22.8%±5.0) had generalized seizures and 37 (52.9±6.0) had a mixture of partial and generalized seizures. Most participants had several seizures per week (45.7%) or month (30.0%) despite the fact that 90% were taking combination antiepileptic drug treatment. We found perceived stigma in 43.6% of patients with refractory epilepsy, and 28.7% self-reported severe stigmatization. Only 4 (5.7%) patients with pharmacosensitive epilepsy reported stigmatization which was mild or moderate in all cases. Perceived stigma had a negative impact on the overall score of the QOLIE-89 (T-score 47.8), as well as on all subscales of QOLIE-89, with the exception of "change in health" and "sexual relations". Patients with refractory epilepsy reporting stigmatization most commonly had very low and low scores on the subscales "health perceptions" (82.9%), "emotional well-being" (71.5%), "memory" (63.4%) and "health discouragement" (62.5%). There was a negative correlation of all QOLIE-89 subscales with perceived stigma severity. CONCLUSION All aspects of the quality of life of Bulgarian patients with refractory epilepsy correlate negatively with the severity of perceived stigma.