Challenges in epilepsy – the perspective of Norwegian epilepsy patients

Abstract

Objectives: For most people with epilepsy (PWE), problems that are not directly related to seizures may constitute major challenges in everyday life. The purpose of this study was to determine the extent of these challenges and any risk factors for their occurrence among PWE in Norway, based on the patients’ own perspective. Materials and Methods: We used a web‐based survey to ask PWE visiting the homepage of the Norwegian Epilepsy Association about different everyday challenges. A link to the survey was accessible via the members’ homepage for a 4‐month period during 2017. Results: One thousand one hundred eighty‐two PWE responded to the questionnaire. Although more than 40% of the cohort reported that they had been seizure free for at least 1 year, the majority reported that tiredness (71%), memory problems (70%), concentration problems (68%), headache or vertigo (51%), and feeling depressed (59%) continued to represent challenges. In addition, fear of being alone, sexual problems or difficulties in social settings were reported by about one‐third of the patients. Reporting having these challenges was significantly associated with female gender, polytherapy, experiencing seizures during the previous 12 months and feeling blue or depressed. Conclusions: The results of this study, reflecting a self‐selected Norwegian population, provide insights into the challenges not directly associated with seizures that impact on the quality of life of PWE. The impacts of such challenges may be underestimated as components of the entire burden of epilepsy.