What should we call pseudoseizures? The patient’s perspective

AbstractBackground: There are numerous terms to describe seizure-like episodes not explained by disease—for example pseudoseizures, psychogenic seizures and non-epileptic attack disorder. Debates about which is best to use tend to centre around theoretical arguments and not scientific evaluation. In this study we examine the meanings of these labels for patients, which have the least potential to offend, and consequently to provide a more positive basis for further management.Methods and results: We interviewed 102 consecutive general neurology outpatients who were asked to consider a scenario that they were being given a diagnosis by a doctor after experiencing a blackout with normal tests. We investigated 10 different diagnoses for blackouts with six different connotations. Three of these connotations—‘putting it on’, ‘mad’ and ‘imagining symptoms’—were used to derive an overall ‘offence score’. Using this score some labels were highly offensive, e.g. ‘symptoms all in the mind’ (89%) and ‘hysterical seizures’ (48%). There were no significant differences between the labels ‘pseudoseizures’, ‘psychogenic seizures’ and ‘non-epileptic attack disorder’. ‘Stress-related seizures’ and ‘functional seizures’ were significantly less offensive than these three diagnoses and were equivalent to ‘tonic–clonic’ and ‘grand mal’.Conclusions: Many labels for seizures unexplained by disease are potentially offensive to patients. The search for labels that accurately describe the phenomenon, can be used by patients, doctors and researchers and enhance trust and recovery is worthwhile and amenable to scientific study