What should we call pseudoseizures? The patient's perspective

Area of Science:

• Neurology
• Psychiatry
• Patient Experience

Background:

• Numerous terms exist for seizure-like episodes not explained by disease, including pseudoseizures, psychogenic seizures, and non-epileptic attack disorder.
• Current debates on terminology are often theoretical rather than based on scientific evaluation.
• This study investigates patient perceptions of these labels to identify terms with the least potential to offend.

Purpose of the Study:

• To evaluate patient perceptions of different diagnostic labels for seizure-like episodes.
• To identify terminology that is less offensive and more conducive to positive patient management.
• To provide a scientific basis for selecting appropriate diagnostic labels.

Main Methods:

• 102 general neurology outpatients were interviewed about their reactions to various diagnostic labels for blackout episodes with normal test results.
• Ten different diagnoses were assessed for their offensiveness using six connotations, including 'putting it on,' 'mad,' and 'imagining symptoms.'
• An 'offence score' was derived to quantify the potential for labels to offend patients.

Main Results:

• Labels such as 'symptoms all in the mind' (89% offensive) and 'hysterical seizures' (48% offensive) were highly offensive to patients.
• No significant difference in offensiveness was found between 'pseudoseizures,' 'psychogenic seizures,' and 'non-epileptic attack disorder.'
• 'Stress-related seizures' and 'functional seizures' were significantly less offensive and comparable to established terms like 'tonic-clonic' and 'grand mal.'

Conclusions:

• Many existing labels for non-epileptic seizures are potentially offensive to patients.
• The development of accurate, patient-accepted terminology is crucial for enhancing trust and facilitating recovery.
• Scientific study is a viable approach to finding appropriate labels for these conditions.