Should we stop saying “epileptic”? A comparison of the effect of the terms “epileptic” and “person with epilepsy”

•Should the label “epileptic” be abandoned and “person with epilepsy” used?•Recent recommendations, informed by a single Brazilian study, say so.•We repeated the Brazilian study in the UK to test how universal their finding is.•The labels “epileptic” and “person with epilepsy” did not evoke different attitudes.•Evidence on the views of those actually with epilepsy is needed.

ObjectiveThe advantages and disadvantages of using “epileptic” as a noun to describe someone with epilepsy have long been debated. Recent high-profile recommendations have stated that the term should not be used, including in English, as it perpetuates stigma. This decision was largely informed by a Brazilian Global Campaign Against Epilepsy study that reported experimental evidence indicating that, with students, the label evokes more negative attitudes than “person with epilepsy”. The generalizability of this effect to different countries/cultures, and thus the justification for the recommendations, has never been tested.MethodsWe replicated the Brazilian study in the UK, in English, while also addressing methodological limitations. It was powered to detect the effects reported by the Brazilian study, with 234 students completing a survey regarding epilepsy attitudes. Half were randomized to Group 1 and half to Group 2. In Group 1, patients were referred to as “people/person with epilepsy” within the attitudinal measures, while in Group 2 they were referred to as “epileptic/s”. Measures included translations of the questions used in the Brazilian study and the Attitudes and Beliefs about Living with Epilepsy scale. Participants' epilepsy familiarity and knowledge were also assessed.ResultsThe two groups were comparable in characteristics. A comparison of their responses to the attitude measures revealed no statistically significant or meaningful differences.ConclusionsIn this English replication, the word “epileptic” did not provoke more negative attitudes. This suggests that the effect reported by the Brazilian study might be culturally dependent. Methodological limitations to that study might also be relevant. Our results have implications for the global debate about how negative attitudes towards epilepsy might be addressed. Simply not saying “epileptic” may not promote the positive attitudes towards epilepsy that had been expected. To know how to best refer to those with epilepsy, evidence on the preferences of those actually living with epilepsy is needed.