Illness representations in people with epilepsy and functional seizures

Abstract

INTRODUCTION: Seizure disorders are common and disabling neurological conditions diagnosed in people presenting to neuropsychology services. The two main forms of seizure disorder are epilepsy and functional seizures. ‘Illness representations’ refer to the beliefs an individual has about their condition and are thought to be related to how people respond to and manage their condition. Many psychological interventions work explicitly with these representations; however, little is known about the illness representations of people with seizure disorders.

Although seizure disorders can start at any age, even less is known about the illness representations of people whose functional seizures start after the age of 40 (so called patients with later-onset functional seizures). It has been proposed that these individuals constitute a clinically separate entity to people with earlier-onset functional seizures. For example, health-related traumatic events may be more salient causal factors for this group. However, there has been minimal research in this area.

AIMS: The over-arching aim of this thesis was to improve current understanding of illness representations in people with seizure disorders through a) a systematic review of factors associated with illness representations in people with seizure disorders and b) a qualitative investigation of the illness representations of people with later-onset functional seizures.

METHODS: A systematic review identified 17 studies examining factors associated with illness representations in people with seizure disorders, which were synthesised narratively. A qualitative investigation using Template Analysis was employed to understand the illness representations of people with later-onset functional seizures. Themes were interpreted according to the dimensions of Leventhal’s Common-Sense Model (identity, causes, cures/control, and consequences).

RESULTS: The results of the systematic review demonstrated moderately strong evidence for associations between illness representations and outcomes including seizure-related characteristics, distress, stigma, coping styles, and health-related quality of life, although the evidence base was weaker for people with functional seizures. Based on the available literature, it was unclear if illness representations differed between the two patient groups.

The Template Analysis study revealed illness representations across the themes of ‘identity’, ‘causes’, ‘triggers’, ‘cures/controls’ and ‘consequences’ with half of the sample reporting health-related events or trauma as causal. Illness representations were characterised by uncertainty, contradiction, and distress, although for some, increased age of onset was viewed as advantageous for acceptance of the condition.

CONCLUSIONS: Illness representations appear to be related to biopsychosocial outcomes in people with seizure disorders, however, further work is needed to assess for any between-groups differences or establish any modifiable factors. The illness representations of people with later-onset functional seizures arguably reflect their confusing and distressing experiences. Patients’ accounts provide some support for the proposition that health-related traumas are relevant precipitators for this group, although a quantitative study would be required to test this hypothesis. Both studies open avenues for research and psychological treatment in people with seizure disorders.