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

Abstract

Summary 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.

Social participation in young people with nonepileptic seizures (NES): A qualitative study of managing legitimacy in everyday life

“…Teachers' reactions and indirect attitudes would usually be illustrated by snide comments that indicated that they believed that the participants could control the seizures. Advice and simplistic solutions, such 8 as that they should be less stressed, gave a feeling of not being understood. In the workplace, participants felt delegitimized by employers and colleagues stating that it was up to themselves to recover.…”

“…However, qualitative research on NES is generally lacking [2,3]. While some studies have investigated the experiences of individuals with NES in relation to their interactions with healthcare services [4 -7], and how they understand their condition [3,[8][9][10][11][12][13], we have found only one study that focused particularly on experiences in everyday life [14].…”

Differences in relatives' and patients' illness perceptions in functional neurological symptom disorders compared with neurological diseases

“…This finding was not present in the ND pairs. This has important practical implications for clinicians who wish to discuss potentially relevant psychological factors with patients with FNSD [2,38]. Our findings suggest that, whilst potentially still requiring persuasion, relatives are more likely to accept that FNSD could be linked to stress, emotional problems or coping difficulties.…”

“…Patients with functional weakness and weakness due to ND were recruited prospectively by with those of neurologists [2].…”

“…Studies in psychogenic nonepileptic seizures (PNES) and functional weakness have demonstrated that patients generally have illness perceptions compatible with behaving and feeling as if they have the corresponding neurological disease [2][3][4][5][6]. Illness perceptions can arise or alter because be seen both as a patient has experienced consequence of a baffling, frightening and unexpected neurological symptom.…”