A call for better information about epilepsy: The patients' perspective-An online survey

For people with epilepsy (PWE), insufficient information and knowledge about the disease might have a negative influence on outcome and lead to poorer quality of life. In contrast, good information may increase empowerment and reduce stigma. This study investigated whether Norwegian PWE want information about different epilepsy-related issues, whether they actually obtain the information that they seek, and the extent to which they are satisfied with the information they receive. Furthermore, we examined which factors that might have influenced the degree of specific information given to PWE.

We invited PWE visiting the homepage of the Norwegian Epilepsy Association to complete a web-based questionnaire about their perspective on obtaining information about epilepsy-related issues. The survey was accessible for a four-month period during 2017.

More than 90% of respondents (n = 1182) wished general information about epilepsy, and over 75% wanted information on more specific issues, like epilepsy surgery. Depending on the subject, the proportion of respondents that reported receiving the information they wished varied from 6.6% to 91.9%. Obtaining information about epilepsy surgery and neurostimulation was significantly associated with male gender. Having tonic-clonic seizures was associated with obtaining information about the diagnosis, an organized lifestyle, regular sleep, and consumption of alcohol.

This study provides insights on how PWE experience provision of relevant information about epilepsy. Although most PWE considered that they obtained information on general epilepsy issues, most PWE interested in information on non-medical treatments and psychosocial issues reported that they did not obtain the information they wanted.