Persons with epilepsy and their caregivers understand the definition of ictal impairment of consciousness

The term consciousness has been reintroduced in the updated seizure classification. Concerns have been raised that "ictal impaired consciousness" may be misunderstood by persons with epilepsy (PWEs) and their caregivers, particularly that English-speaking individuals might equate it with complete loss of consciousness. We conducted an online survey distributed via epilepsy organizations and social media to assess whether English-speaking PWEs and caregivers could understand and apply a simple medical definition of consciousness: “In medical terms, consciousness means being able to remember things and respond to what is happening around you. During a seizure, consciousness is considered affected if the person cannot remember what happened and if they are unable to respond normally when people try to interact with them.” The survey was completed by 253 respondents (148 caregivers, 105 PWEs). Almost all participants (97%) found the definition clear, 90% reported they could apply it to their seizures, and 99% demonstrated comprehension by correctly interpreting an example question. No significant differences were observed between PWEs and caregivers, across education levels, or by seizure characteristics. These findings indicate that PWEs and caregivers can readily understand and apply the concept of ictal impairment of consciousness when given a concise, patient-friendly definition.