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04 August 2016

Study explores the experiences of patients living with psychogenic nonepileptic seizures

 

A study has explored patients' accounts of living with psychogenic nonepileptic seizures (PNES) to reveal insights into a poorly understood, and varied disorder.

Scientists from the Academic Neurology Unit at the University of Sheffield reviewed the findings, analyses and samples of 21 qualitative studies into PNES published after 1996.

The studies were all based on analyses of patients' descriptions of their seizures in their own words.

Methodology

The study, published in Seizure, examined accounts from over 220 patients, describing experiences of seizure events, diagnosis, treatment and management, emotional events and impact on daily life.

Distinctive use of language

Researchers found that people with PNES had varying experiences of their seizures.  They also found that the way in which people with PNES used language to describe their seizures was very different to the way in which people with epileptic seizures spoke.  

Psychological explanations

Many patients with PNES expressed a sense of uncertainty around their condition and frequently resisted psychological explanations for their symptoms, however some demonstrated insight into the way they processed emotions.  

Negative experiences with healthcare professionals

Researchers found that it was common for the patients to seek validation of their experiences and that they often reported feeling ignored or doubted.  It was common for patients to have had negative experiences with healthcare professionals. 

Stressful life events

The study found that many patients reported past or current stressful events in their lives, and PNES were described as a 'significant burden associated with financial and psychosocial losses'.

Conclusion

The study concludes that, while the qualitative studies have proved useful in gaining insight into patients' experiences of PNES, many patient groups such as men, young people, the elderly and non-Western patients are underrepresented in existing studies.  The conclusion suggests that accessing these patient groups using new methods of data collection could help scientists to deepen their understanding of PNES.

 

Read more about the language used to descripe PNES here  

 

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