A call for better information about epilepsy: The next of kin perspective

•Insight into the nature of the disease is a prerequisite for being able to give those affected the best possible care•Based on an online questionnaire, about 90% of 231 Norwegian next of kin called for more and better information about the disease, both in general and about specific topics•Surprisingly, those caring for patients with good seizure control were the ones most dissatisfied with the given information•Perceived lack of information among close relatives was associated with high levels of emotional stress For next of kin (NK) to people with epilepsy (PWE) insufficient knowledge about the disease might have a negative impact on disease management, utilization of the health care system and conveyance of attitudes in the society. The aim of this study was to investigate to which degree Norwegian NK to PWE called for and obtained relevant information about different epilepsy-related issues. We invited NK visiting the homepage of the Norwegian Epilepsy Association to complete an online questionnaire regarding information about epilepsy. The survey was accessible for a five-month period. 231 NK fulfilled the questionnaire. Almost 90% of the respondents called for more information about specific topics, such as seizure management and premature death in epilepsy, in addition to more general information about the disease. Those who experienced high levels of psychological distress were particularly in need of more information about all epilepsy-related issues. Depending on the subject, the proportion of respondents that reported not to have obtained information on specific issues varied from 42% to 88%. Good seizure control in the person they cared for was significantly associated with receiving insufficient information about seizure management, seizure-related injuries, concentration and memory, and borderline significant about depression and anxiety. The majority of Norwegian NK to PWE call for more and better information about the disease. Perceived lack of information among close relatives was associated with high levels of emotional stress. This should be a wake-up call for healthcare professionals working with this patient group.