Knowledge and attitudes towards epilepsy: A survey of people with epilepsy.

Problem: Many studies focus on knowledge and attitudes of unaffected people towards epilepsy and people with epilepsy (PWE). The perspective of PWE themselves is much less explored.

Methods: We invited PWE in Germany to answer a questionnaire on their knowledge and attitudes towards epilepsy and PWE.

Results: The questionnaire was completed by 230 PWE (median age: 40 years; min./max.: 19/83; 66 % female). Of PWE, 22 % thought that PWE are more helpful, and 10 % thought that PWE are friendlier than other people. Nevertheless, reservations about relationships and friendships with other PWE existed: of the participants, only 74 % would definitely go on a date with another PWE, and 90 % would definitely include another PWE they liked into their circle of friends. Swimming was judged as more dangerous for PWE than for healthy people by 71 % of PWE. Of PWE, 86 % correctly assumed it was not useful to hold a person having a seizure to the ground. Putting a solid object in the mouth was considered not useful by 85 % of PWE. Of PWE, 20 % would definitely administer an available emergency medication if another PWE had a seizure. For 67 % of PWE, certain preconditions should have to be fulfilled such as an available document with instructions. Of PWE, 11 % stated they would not administer an available emergency medication if another PWE had a seizure.

Conclusion: Although positive attitudes of PWE towards other PWE exist, we also found some reservations calling for psychosocial support. Most PWE had sufficient knowledge about risks of certain activities and about measures to be taken during a seizure. Nevertheless, a small group of PWE showed knowledge gaps. Thus, educational support still seems essential.