Long-term course of psychogenic nonepileptic seizures: Who gets seizure-free, has better functional level and higher health-related quality of life?

• Published in: Epilepsy & behavior Vol. 148; p. 109463
• Main Authors: Uhlmann, Carmen, Schmid, Petra
• Format: Journal Article
• Language: English
• Published: Elsevier Inc 01.11.2023
• Subjects: Dissociative seizures; functional/dissociative seizures (FDS); Global outcome; Psychogenic nonepileptic seizures; Quality of life; Social functioning; Psychogenic nonepileptic seizures; Global outcome; Dissociative seizures; PNES; HRQoL; Social functioning; functional/dissociative seizures (FDS); Quality of life
• ISSN: 1525-5050; 1525-5069
• DOI: 10.1016/j.yebeh.2023.109463

•Over the course of up to 15 years, seizure frequency in PNES is reduced significantly and one-third of the participants become seizure-free.•Even with seizure reduction, participants remain impaired in their level of functioning, which is caused by the low rate of employment.•Furthermore, only 48% had a satisfying health-related quality of life.•Augmented treatment approaches that may address experiential avoidance need to be developed. The disease course of psychogenic nonepileptic seizures (PNES) over a prolonged period of time remains unclear. The aims of the study were: 1. to describe the course of illness with a median follow-up time of 4 years and a range of 2–15 years; and 2. to identify distinguishing features between participants regarding seizure cessation, functional level and health-related quality of life. Formerly, inpatients of an epileptic ward diagnosed with PNES between 2000 and 2013 were contacted via mail. They were asked by questionnaire about illness characteristics, i.e., age at onset, PNES status at onset and in the course, treatments, psychosocial situation, and quality of life status. Two-thirds of the N = 63 formerly inpatients were female, their age at onset was 26.7 years. Seizure frequency decreased significantly over time, 31.7% were currently seizure-free, but still only 37% were regularly employed. Only 48% had a satisfying health-related quality of life. The remitted participants had a shorter duration of illness and higher health-related quality of life. Participants with a good level of functioning were more likely to be male, took fewer medications, and had a higher health-related quality of life. Those participants with higher quality of life were more frequently employed and had fewer seizures. As participants continue to be severely limited in their functional level and quality of life over the period under review, enhanced treatment approaches that address experiential avoidance seem to be needed.