What is it like to receive a diagnosis of nonepileptic seizures?

Abstract

The aim of this qualitative study was to provide insight into the experience of receiving the diagnosis of nonepileptic seizures (NES) from the patient’s perspective. Semistructured interviews were conducted with eight patients who had received the diagnosis of NES over the preceding 6 months. All participants were on a waiting list for psychological treatment. Verbatim records of the interviews were analyzed using interpretative phenomenological analysis (IPA). Six main themes emerged from the data (“the experience of living with nonepileptic seizures”, “label and understanding”, “being left in limbo land”, “doubt and certainty”, “feeling like a human being again”, and “emotional impact of diagnosis”). An ability to integrate the diagnosis into a personal narrative was key to participants’ acceptance of the diagnosis. The communication of the diagnosis left some participants feeling distressed. The results suggest that patients need more time and resources to understand the diagnosis and more support after they have received it.

Introduction

Nonepileptic seizures (NES) are episodes of altered movement, sensation, or experience that resemble those caused by epilepsy but are not due to abnormal electrical activity in the brain [1]. NES are episodes of paroxysmal impairment of self-control associated with a range of motor, sensory, and mental manifestations, which represent an experiential or behavioral response to emotional or social distress [2]. NES are one of the most common diagnoses in a seizure clinic. One study, which reportedly captured all patients with a blackout first presenting to a neurologist, emergency room, or primary care physician, judged that 57.4% had epilepsy, 22.3% had fainted, and 18.0% had NES [3]. NES represent a serious medical problem: patients are at risk of iatrogenic injury and death from inappropriate treatment with antiepileptic drugs [4], [5], and often have disabling psychopathology [6]. Although the etiology and nosology of the condition remain controversial [7], most experts consider psychotherapy the treatment of choice [8], [9].

The uncertainties around NES are reflected by the large number of different labels used for the condition [10] and by the lack of agreement on how the diagnosis should be communicated [11], [12]. However, it is recognized that the communication of the diagnosis of NES represents a significant challenge: the majority of patients have had a diagnosis of epilepsy for several years when they learn that this diagnosis is inaccurate [13], most have been treated inappropriately with antiepileptic drugs, and many have been admitted to hospital with apparent status epilepticus [14]. As with other “medically unexplained” illnesses, a perception exists in some parts of the medical community that there is a marked incongruence between doctor and patient beliefs about the cause of symptoms: that doctors consider them to be a manifestation of distress or mental illness, whereas patients believe them to be almost exclusively physical ([e.g., 15]). Some studies suggest that patients may acknowledge psychological or social stressors but not consider these relevant to their seizure disorder [16]. An alternative view is that this apparent difference is a function of the language used in the consultation, and that patients are typically much more willing to consider a psychosocial explanation for their symptoms than the literature might suggest [17].

The perception of a fundamental difference in beliefs is likely to be one important reason why neurologists describe the process of communicating the diagnosis of NES as “negotiating a minefield” [18]. A protocol for the explanation of the diagnosis of NES has been proposed [19], but its effectiveness or acceptability has never been tested in a prospective or controlled fashion.

A mode of communication that enables patients to comprehend the nature of their seizures is very important because it is likely to affect clinical outcome. Whereas NES can resolve completely after the explanation by the doctor [20], outcome is significantly worse in patients who continue to think that they have epilepsy [21], [22]. Some report feeling angry and confused after receiving the diagnosis [21], [23], [24], and unsuccessful communication is likely to increase the risk of continuing inappropriate treatment with anticonvulsants. It is interesting that 41% of patients diagnosed with NES (and no additional epileptic seizures) were still found to be taking antiepileptic drugs a mean of 4 years after the diagnosis of NES had been communicated to both them and their primary care physicians [25]. Patients are also unlikely to engage with psychological treatment if they continue to think that they should be treated with antiepileptic drugs.

To date there is very limited information about patients’ experience of receiving the diagnosis which makes it difficult to improve the communication process. This study uses a qualitative methodological approach, interpretative phenomenological analysis (IPA), to enhance our understanding of this experience. IPA is particularly suitable for exploring people’s experiences and “inner world,” and has been widely used in health psychology and clinical research [26].