What's in a name? 'Psychogenic' non-epileptic events in children and adolescents.

Abstract

SIR–When a young person presents with events appearing to be epileptic seizures, one consideration is that the underlying cause may turn out not to be epileptic. Non-epileptic events are not accompanied by the electrophysiological changes associated with epilepsy, although the events may involve observable abrupt paroxysmal changes in consciousness or other characteristic behaviours seen in epileptic seizures.1 Absence of positive findings on physical investigation, in conjunction with information from detailed history, may result in these non-epileptic events being best considered ‘psychogenic’. These young people will meet multiple professionals on their journey through the health service, including general practitioners, accident and emergency workers, and cardiologists, before referral to neurologists, psychologists, and psychiatrists. Accurate diagnosis is likely to involve taking a comprehensive description of the episodes, acquiring the child's developmental and medical history, video-electroencephalography to rule out epileptic seizures, and an evaluation of family functioning. Effective communication of the diagnosis is the start of successful treatment. This needs collaboration between practitioners in the fields of neurology, psychology, and psychiatry, and a common understanding of the problem, as well as clear dissemination to the child's network, including involved family members/careers and school personnel. Understanding the events as psychological rather than physical in origin leads to the assumption that there is underlying psychological distress for the child and there is often positive evidence for this.2 As in adults, some children with non-epileptic events will have evidence of additional psychopathology, for example depression or anxiety. In others, the events are the sole manifestations of an underlying stressor, such as bullying at school, perfectionism, or undetected learning difficulties. In this way, the events are usually understood in current psychiatric classification systems as a manifestation of conversion disorder or functional neurological symptom disorder.3 What to call these psychogenic non-epileptic events has been the subject of some debate and as many as fifteen different names have been used to describe the events.4 Commonly used names in the medical literature within the paediatric population include Non-Epileptic Seizures (NES), Psychogenic Non-Epileptic Seizures (PNES), and Non-Epileptic Attack Disorder (NEAD). The term pseudoseizure is still in frequent usage. Parents of affected children may prefer the terms functional seizures, nonepileptic events, and NEAD4 whilst proposed management guidelines use the term NES.5 Although these names are often used interchangeably, it is not clear that they are always used to indicate the same phenomena. Some terms may refer to non-epileptic events of specifically psychogenic aetiology whereas others may encompass nonepileptic events which are not psychogenic in origin, such as syncope, tremors, myoclonus, dystonia, and parasomnias. The way the diagnosis is explained is regarded as key to initiating engagement with treatment and recovery. As the name used for this disorder will give the young person and their family information about how they should understand the events, the choice of name is key to the way they will understand the diagnosis. Furthermore, the name suggests to the patient something about the clinician's orientation to them and their problems. A carelessly named disorder may be understood differently by different professional groups and risks engendering ill-informed or negative attitudes in some clinicians. Indeed, young people with non-epileptic seizures and their families may actually be more expectant that clinicians will judge them negatively than other patient groups, as they may have experienced being told that their seizures are ‘not real’ or ‘put on’. Nonetheless, the name still needs to carry useful information for the lay person, non-specialist, and specialist clinician alike. There are no studies of the prevalence or incidence of psychogenic non-epileptic events, no controlled treatment studies, and no widely agreed upon guidelines in the pediatric population. Misdiagnosis and inappropriate treatment are common,4 likely resulting in iatrogenic complications and significant health-related costs. The variety of names used can have an impact on patient understanding and acceptance but also hamper badly needed research efforts. Neurologists, psychiatrists, and others need to work together to reach a consensus regarding what to call this phenomenon.