Attitude of people with epilepsy in Serbia toward surgical treatment of epilepsy

Abstract

Objective: Approximately, one-third of patients with epilepsy (PWE) have drug-resistant epilepsy (DRE). This condition significantly impacts quality of life, leads to various negative socioeconomic consequences, and increases the risk of sudden unexpected death in epilepsy (SUDEP). Surgical treatment is considered the most effective option for patients with lesional DRE. However, real-world data suggest that this treatment method remains significantly underutilized. We aimed to assess the awareness and attitudes of PWE in Serbia toward epilepsy surgery (ES). Methods: This multicenter study included 247 consecutive patients referred to epileptologists at various centers in Serbia between May 2023 and September 2024. Participants voluntarily completed a self-reported questionnaire. The questionnaire had 27 questions, covering socioepidemiological data (six questions), patients' epilepsy and any previous surgery (11 questions), awareness of different modalities of epilepsy treatment and sources of information about them (2 questions), while the last six questions were in the form of hypothetical scenarios, in which patients had to choose whether to accept or refuse ES when faced with different estimated efficacy and risk of ES. Results: Less than half of the participants were familiar with ES. Only 16.6% of the patients expressed willingness to undergo the procedure when presented as a safe and effective therapeutic option. Patients who had not achieved seizure control and those with a history of ictal injuries and hospitalization due to seizures were more motivated to consider ES. The most common reasons for accepting surgery were the potential for freedom from ASMs and improved seizure control. In contrast, the most frequent reasons for rejecting it were a perception of adequate seizure control with ASMs and fear of surgery complications. Significance: Patients in Serbia are not adequately informed about the surgical treatment options for epilepsy. A multidisciplinary approach, combined with greater media involvement, is essential to raise awareness about this effective treatment option for those with DRE. Plain Language Summary: This study was conducted in order to understand how much people with epilepsy in Serbia know about epilepsy surgery (ES) and what their attitude is toward it. Fewer than half of the participants were aware of ES, and only a small percentage were willing to consider it, even when it was presented as a safe and effective option. Those who struggled more with their seizures or had experienced serious injuries seemed more open to the idea of surgery. This shows that a significant upgrade in patient education and availability of different sources of information concerning ES is needed in Serbia.