PO052 How to talk about epilepsy: evidence from experimental studies and the views of those with epilepsy in the uk and their family and friends

Person with epilepsy, an epileptic, or an epileptic person? A disease, a disorder or a condition? How to talk about epilepsy can be divisive. Whether recent recommendations on this issue from the ILAE and IoM are suitable for the UK is not known. We completed a mixed-methods survey with 970 patients and carers from the UK to explore their preferences and completed two experimental studies with 640 students to determine what impact different labels have on attitudes towards epilepsy. Most (88.9%) patients and significant others strongly favoured ‘person with epilepsy’. Qualitative analysis showed this was because by not including the word ‘epileptic’ and by affirming personhood before disability, it was felt to less likely restrict a listener’s expectations or evoke the condition’s negative associations. It was also considered to imply the person might have some mastery over their epilepsy. The experimental studies, however, failed to detect any sizeable effect of the different labels on attitudes or expectations. With regards labelling, patients and carers were against ILAE recommendations to call epilepsy a disease. In common parlance, ‘disease’ is associated with ‘contagiousness’. ‘Condition’ was instead favoured by most (73.2%). Our findings can help clinicians make informed decisions about the language they use.