Abstracts

Rationale: Recognition and evaluation of current treatment as well as adverse effects are important factors for a successful treatment with antiepileptic drugs (AEDs). The purpose of this study was to investigate the patients’ perception of adverse events and relate this to adherence and quality of life in patients with refractory epilepsy.Methods: An anonymous questionnaire focusing on perception of adverse events, quality of life and adherence was distributed to adult patients admitted to the National Center for Epilepsy, Oslo University Hospital, Norway. 20 patients were also interviewed to focus on patients’ perception and attitudes towards adverse effects and adherence. The questionnaire was based on internationally validated and recognized tools (Adverse Event Profile, Beck Depression Inventory and Neurological Disorders Depression Inventory for Epilepsy, and a VAS-scale as a measure on quality of life).Results: Questionnaires from 158 patients were analyzed and the patients’ mean age was 35.7 years, 61% women/39% men. 61% used polypharmacy with 2-4 AEDs. The adverse effect burden of AEDs is extensive, as 99% reported one or more adverse effects during the last four weeks. Adverse event overload was found in 49% of the patients. 77 % of the patients listed that they forget to take their AEDs often or frequently, and 23 % deliberately made changes to their treatment on their own. Reasons for poor adherence included fear of adverse effects, that they forget, and that they feel better. There was a correlation between adverse event overload, reduced quality of life and poor adherence.Conclusions: Patients with refractory epilepsy have a complex polypharmacy and suffer from a heavy adverse effect load that affects their lives. Better information and open communication about clinical use of AEDs may improve the treatment outcome.