Between fear of death and just a warning sign: Seizure severity scales neglect the subjective quality of periictal perceptions

The burden of epilepsy is not only related to seizure frequency; the severity of epileptic seizures considerably affects patient’s lives. A number of seizure severity scales have thus been developed for a systematic assessment. Items considered relevant in these scales mainly pertain to objective features, such as seizure duration, loss of consciousness, and seizure-related injuries. In contrast, subjective experiences of seizures are considered only in their functionality as “warnings”, whereas the quality of subjective perceptions and feelings are disregarded phenomena. This leads to a gap between the often-distressing subjective experiences which people with epilepsy remember from their seizures and the perception of physicians which may negatively impact physician-patient communication and interaction and question their valid use as treatment outcomes. We advocate here to develop new seizure severity assessments in collaboration with patient organizations which integrate also the subjective quality of seizures.