Patients' and neurologists' perception of epilepsy and psychogenic nonepileptic seizures

Purpose: Although differences in illness perceptions between neurologists and patients with epilepsy or psychogenic nonepileptic seizures (PNES) are likely to be clinically relevant, this is the first study to attempt a direct comparison. In addition, this study compares the illness perceptions of patients with epilepsy with those of patients with PNES.

Methods: Thirty-four patients with epilepsy, 40 patients with PNES, and 45 neurologists were recruited. All patient participants completed versions of the illness perception questionnaire revised (IPQ-R) adapted for epileptic or nonepileptic seizure disorders, single-item symptom attribution question (SAQ), Hospital Anxiety and Depression Scale (HADS), Quality of Life in Epilepsy-31 (QOLIE-31), and Liverpool Seizure Severity Scale (LSSS). Participating neurologists completed two versions of the IPQ-R and two SAQs for epileptic and nonepileptic seizure disorders.

Key findings: Differences in illness perceptions between patients with epilepsy and patients with PNES were minor compared to those between patients with either seizure disorder and neurologists. Neurologists considered both seizure disorders more treatable and more amenable to personal control than did the patients themselves. Neurologists had much more polarized views of the etiology of both conditions; whereas patients mostly considered the causes of their seizure disorders as partially "physical" and partially "psychological," neurologists perceived epilepsy as an essentially "physical" and PNES as a clearly "psychological" problem.

Significance: There are considerable differences between the illness perceptions of patients with seizure disorders and their doctors, which could represent barriers to successful clinical management. In particular, a discrepancy between neurologists' and patients' beliefs about the personal control that patients may be able to exert over PNES could contribute to the confusion or anger some patients report after the diagnosis has been explained to them. Furthermore, patients' endorsement of "physical" causes for PNES may reflect an unrealistic faith in the effectiveness of "physical" treatments and could be a cause of tension in patients' relationship with their doctor, for instance when the neurologist attempts to withdraw antiepileptic drug treatment or refers patients for psychological interventions.