Epilepsy Information

American Epilepsy Society Poster (Abst. 1.348)

A Comparison of self-reported quality of life in Medically Refractory Partial Epilepsy patients and Psychological Non Epileptic Patients

Authors: B. Matzner, Lorna Myers, J. Kanter, O. Laban and M. Lancman

For epileptologists, establishing a strong patient-doctor working alliance with the psychological non epileptic patient (PNES) can be problematic since the disorder is not neurological. The fact that the lives of many PNES patients appear more disrupted than some very compromised epilepsy patients can also be striking from a medical perspective. However, these groups share a number of similarities. As in epilepsy, patients with PNES can experience many of the same concrete limitations (e.g. driving prohibition, the need for work and school accommodations) and secondary impacts of seizures (e.g. the unexpected nature of seizures, injuries as a result of seizures, stigma). Co-morbidity with depression and anxiety is also common. The purpose of this study was to determine whether diminished quality of life (QOL) in PNES is comparable to that reported by medically refractory epilepsy patients.


Twenty seven consecutive patients with refractory partial epilepsy (uncontrolled seizures and taking 2 or more anti epileptic drugs at the time of the assessment) and 33 patients with PNES (diagnosed by an epileptologist through video-EEG monitoring) who completed the QOLIE-31 test were included. Where necessary, the word “epilepsy” was replaced with “seizures” in the PNES inventory. Cognitive, emotional, energy, medication effects, overall, seizure worry, social function and total scores (components of the QOLIE-31) were compared between groups using independent t test.

For the epilepsy group and PNES groups, mean age was 41 years and 38 years respectively. Gender distribution was 4 males and 29 females in the PNES group and 11 males and 16 females in the epilepsy group. Mean years of education was 14 years for the PNES group and 12.66 for the epilepsy group. Epilepsy and PNES scores were the following: mean Cognitive scores (48.7 - 3.0 vs 38.5 - 1.8), Emotional scores (39.07 _2.18 vs 31.1 -1.38 ), Energy/Fatigue scores (50.52 -2.9 vs 38.18 -1.9), Medication Effect scores (46.37 -3.3 vs 45.82 _2.0), Overall QOL (51.53 _3.20 vs 39.64 -2.1), Seizure Worry (51.26 -3.1 vs 31.91 -2.2), Social functioning (42.78 -3.4 vs 38.82 -2.2), and Total score (44.90 -2.6 vs 33.79 -1.7). PNES patients reported significantly worse QOL in the following areas: Cognitive functions (p <0.006), Emotional (p <0.002), Energy/Fatigue (p <0.001), Overall QOL (p <0.004), Seizure Worry (p <0.003), and Total score (p <0.001).

Patients with PNES reported diminished QOL and in fact, significantly lower total QOL, energy, and cognitive functions and significantly greater worry about seizures than patients with refractory partial epilepsy. This reveals that the emotional distress and effect that this disorder has on these patients is experienced as profound. Regardless of the neurological or psychological etiology of the disorders, both epilepsy and PNES patients report significantly diminished quality of life. Results from this study underscore the importance of compassionate care and timely/appropriate referrals for PNES patients.