Epilepsy in Estonia: A Quality‐of‐Life Study

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Abstract
Summary: Purpose: To study the impact of epilepsy and its treatment on people with epilepsy in Estonia and to analyze how it is affected by the characteristics of epilepsy. Methods: Clinical and demographic data about patients were obtained from medical notes and mailed self‐completed questionnaires (including the RAND 36‐Items Health Survey 1.0 (RAND‐36)). Results: Information was collected from 203 patients aged 20–74 years, who all had active epilepsy. A third of the respondents had been seizure free during the last year. Eighty‐four percent were receiving monotherapy. More than half of respondents felt stigmatized by epilepsy, 24.7% of them highly so. A third were working full‐time, 31.9% were underemployed workers, and 11%, unemployed. Sixty‐two percent of these same unemployed or underemployed workers considered their epilepsy to be a significant reason for this situation. Overall, 44% believed they had been treated unfairly at work or when trying to get a job. Study respondents scored lower in all domains on the RAND‐36 than did persons from the control group. The biggest differences were found in five domains: Social functioning, Role limitations–physical, Role limitations–emotional, General health, and Vitality. Conclusions: The clinical characteristics of this study were similar to those of most other series of prevalence cases of epilepsy. The level of employment among persons with epilepsy was not lower than that in the general population. The percentage of stigmatization was high. There were significant differences in the way respondents scored on the stigma scale and on the RAND‐36 domains when measuring their health status, depending above all on seizure frequency and type.