Traditionally in medicine a great deal of emphasis is placed on the pathogenic agents and underlying biological mechanisms of illness. However, there is an emerging interest in examining patients’ subjective accounts and using such findings to improve our understanding of disorders, as well as the quality of healthcare provisions. Research focusing on patients’ perceptions and attitudes demonstrate that what patients say (and how they say it) provides an important complementary voice to the biomedical one. This voice taps directly into the problems that are most pressing to those who live with the condition.
In this special edition we present a series of papers published in Seizure: European Journal of Epilepsy exploring the perceptions and lived experiences of individuals with psychogenic nonepileptic seizures (PNES), one of the most important differential diagnoses of epilepsy. We have recently summarised some of these papers (and others) in a systematic review (Rawlings and Reuber, 2016).
The first paper in the collection demonstrates that understanding how patients with PNES appraise and manage life events can help to identify factors that potentially perpetuate or contribute to the development of the condition. Testa et al. (2012) shown that although patients with PNES self-reported the same amount of stressful life events to those with epilepsy and healthy controls, patients subjectively experienced greater levels of distress caused by these events.
Robson et al. (2012) used linguistic analysis to focus on how patients describe their seizure episodes, which provided important insights into the clinical encounters of individuals with PNES. Examining the audio-recordings of consultations between neurologists and patients, individuals with PNES were more likely to use witness accounts to catastrophise their seizure experiences, whilst those with epilepsy tended to use the same accounts to normalise their life with seizures.
The way patients experience and present their problems can also contribute to the diagnostic process. In a case comparison study of PNES and epilepsy, Plug et al. (2009) demonstrated that how patients share and communicate information with their doctor can map onto the individuals’ diagnosis.
Patients’ perceptions of their condition can help to inform psychological treatments. Mayor et al. (2013) evaluated a brief-psychoeducation intervention that addressed the attitudes, beliefs and understanding of patients with PNES. This resulted in a range of clinical and social improvements.
We conclude this series with a paper by Duncan et al. (2016), which makes an important contribution to clinicians’ and researchers’ understanding of what factors are relevant to the outcome of PNES. The authors reported that patients who held an internal locus of control (the belief that they themselves can control events and outcomes) were more likely to be seizure free six-months following a psychological intervention.
