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.