Abstract
ObjectiveWe aimed to characterize the demographics of adults with dissociative (nonepileptic) seizures, placing emphasis on distribution of age at onset, male:female ratio, levels of deprivation, and dissociative seizure semiology.MethodsWe collected demographic and clinical data from 698 adults with dissociative seizures recruited to the screening phase of the CODES (Cognitive Behavioural Therapy vs Standardised Medical Care for Adults With Dissociative Non‐Epileptic Seizures) trial from 27 neurology/specialist epilepsy clinics in the UK. We described the cohort in terms of age, age at onset of dissociative seizures, duration of seizure disorder, level of socioeconomic deprivation, and other social and clinical demographic characteristics and their associations.ResultsIn what is, to date, the largest study of adults with dissociative seizures, the overall modal age at dissociative seizure onset was 19 years; median age at onset was 28 years. Although 74% of the sample was female, importantly the male:female ratio varied with age at onset, with 77% of female but only 59% of male participants developing dissociative seizures by the age of 40 years. The frequency of self‐reported previous epilepsy was 27%; nearly half of these epilepsy diagnoses were retrospectively considered erroneous by clinicians. Patients with predominantly hyperkinetic dissociative seizures had a shorter disorder duration prior to diagnosis in this study than patients with hypokinetic seizures (P < .001); dissociative seizure type was not associated with gender. Predominantly hyperkinetic seizures were most commonly seen in patients with symptom onset in their late teens. Thirty percent of the sample reported taking antiepileptic drugs; this was more common in men. More than 50% of the sample lived in areas characterized by the highest levels of deprivation, and more than two‐thirds were unemployed.SignificanceFemales with dissociative seizures were more common at all ages, whereas the proportion of males increased with age at onset. This disorder was associated with socioeconomic deprivation. Those with hypokinetic dissociative seizures may be at risk for delayed diagnosis and treatment.
Highlights
Difficulties with case ascertainment and sample size have been a barrier to answering questions regarding the demographics of patients with dissociative seizures
We aimed to describe the cohort in terms of age, distribution of age at onset of dissociative seizures, duration of seizure disorder, level of socioeconomic deprivation, and other social and clinical demographic characteristics
We identified 901 patients with dissociative seizures via neurology/specialist epilepsy clinics participating in the CODES trial
Summary
Difficulties with case ascertainment and sample size have been a barrier to answering questions regarding the demographics of patients with dissociative seizures ( called psychogenic nonepileptic seizures). Different levels of diagnostic probability may be clearly defined, there is no objective test that can be relied upon to identify all patients with complete certainty at an early point in the illness trajectory.[1] As noted elsewhere, the overwhelming majority of studies have been published from single secondary or tertiary care centers,[2] with local practice and referral bias creating difficulties with generalizability and interpretation. It has generally been reported that dissociative seizures start with a median age at onset in the mid‐to‐late twenties.[2,3] it has been recognized that older people can develop the disorder.[4,5] Previous epidemiological studies suggest that the majority of patients are female, but a different gender ratio has been reported in an older age group.[4,5].
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