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Background: Up to 30% of patients referred to epilepsy centres for drug-resistant epilepsy turn out to have psychogenic nonepileptic seizures (PNES). Patients with PNES are a very heterogeneous population with large differences in regard to underlying causes, seizures severity, and impact on quality of life. There is limited knowledge regarding the long-term seizure prognosis of youth with PNES and its influential factors., Methods: We have performed a retrospective study on adolescents diagnosed with PNES who were receiving inpatient care at our hospital for 2-4 weeks in the period of 2012-2020. They all attended psychoeducational courses to educate them about PNES, coping with the seizures, and possible contributors to seizure susceptibility. There were 258 patients who fulfilled the inclusion criteria. We contacted them by text messages, through which they received brief information about the study and an invitation to participate. There were 62 patients (24 %) who agreed and participated in structured telephone interviews. We excluded 10 patients due to concomitant epilepsy. The mean age of the remaining 52 participants was 20.9 years (16-28 years), and 45 (87 %) were women., Results: After a mean of 4.7 years (2-9 years) since discharge from our hospital, 28 patients (54 %) had been free of seizures in the last 6 months. There were 16 patients (31 %) who had better situations in regard to seizures but were not completely seizure free, while 8 patients (15 %) were either unchanged (3 patients) or worse (5 patients). There were 39 patients (75 %) who had received conversation therapy, and 37 patients (71 %) had been treated by a psychologist or psychiatrist. There were 10 patients (19 %) who had dropped out of school or work, and the percentage increased with age. There were 42 patients (80 %) who perceived their health as good or very good., Conclusion: Patients had a relatively favourable seizure prognosis as 54% were free of seizures and 31% had a better seizure situation, at the time of this study. However, the fact that 19% had dropped out of school or work was worrying. Young age and satisfaction with treatment were associated with being employed or receiving education. Satisfaction with perceived treatment was significantly associated with personal experience of good health. This emphasizes the importance of early diagnosis, adapted interventional measures, and long-term follow-up by healthcare for young people with PNES., Competing Interests: Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: HNK has served as a paid consultant for Eisai. OH has received speakers honorary from Livanova, Eisai, UCB, Roche, Novartis, Desitin, and Jazz. None of the other authors have any conflict of interest to disclose, (Copyright © 2024. Published by Elsevier Inc.)

Objective: How do persons with epilepsy (PWE) experience their everyday lives after epilepsy surgery?, Methods: Qualitative thematic interviews were conducted with eight PWEs (30 to 60 years old). They were recruited when coming for post-operative control 1 to 5 years after epilepsy surgery. The interviews were transcribed. They were analysed by thematic analysis and inspired by Goffman who examines everyday life activities as a theatre play., Results: Before surgery, a substantial invisible and hidden work of adjustments was performed to prevent seizures, to secure help from others if seizures occurred, and to protect oneself from others' gaze during a seizure. This invisible work continued after surgery even for those who became seizure-free; but now for the purpose of protecting oneself from relapse of epilepsy. From the participants perspective there was no or minor change in daily activities among those not becoming seizure-free after surgery. In contrast, those who became seizure-free enjoyed the freedom to participate in social activities without planning or restrictions., Conclusions: A striking finding was that daily life after surgery comprises considerably invisible work to protect a social self, and this preventive and protective invisible work continued, although those who became seizure-free were living an ordinary socially healthy life., Competing Interests: Disclosure statement No conflicts of interest to declare., (Copyright © 2023 The Authors. Published by Elsevier B.V. All rights reserved.)

This qualitative study explored social participation in young people with nonepileptic seizures (NES), particularly how legitimacy of illness is managed in everyday life. Young people with NES, all female and aged between 14 and 24 years (N=11), were interviewed and followed up over a 14-month period. The transcripts were analyzed using thematic analysis. Four main themes were elaborated: 1) Delegitimizing experiences from families, schoolteachers, colleagues, and employers were part of everyday life. 2) Fear of being exposed to delegitimizing events resulted in the young people trying to conceal the diagnosis; for some, this resulted in isolation from all social arenas, apart from their closest relationships. 3) Support from close relationships was protective against delegitimization and contributed towards greater social participation. 4) Perceiving NES as a legitimate disorder contributed to increased social participation. We found a relationship between legitimacy of illness experienced by the participants and the extent to which they either participated or retreated socially. Those who had an illness perception that was personally meaningful experienced their condition as being more legitimate and participated more socially., (Copyright © 2016 Elsevier Inc. All rights reserved.)

The main differential diagnosis of epilepsy among young adults is psychogenic non-epileptic seizures. Such seizures may manifest themselves in very different ways and usually have complex root causes. Optimal treatment of persons experiencing seizures of this type requires close cooperation between the neurologist and the psychiatrist.

Purpose: This qualitative study explored the impact of using a biopsychosocial approach to explain the diagnosis of non-epileptic seizures (NES)., Methods: Semi-structured interviews of eleven adolescents and young adults who had participated in an inpatient follow-up stay of the diagnosis were used. The interviews were taped, transcribed, and analysed using systematic text condensation., Results: Three key themes were identified:1."Threatened self-image": Patients initially perceived their diagnosis as being purely psychological. As they did not accept that they had mental disorders, they interpreted this as frightening and threatening, and resisted the diagnosis.2."Being believed and belief in oneself": Participants had many experiences of being suspected by healthcare providers of staging their seizures. Some had even begun to have doubts themselves as to whether the attacks were voluntary or not. Explaining that unconscious processes are involved in NES contributed towards increasing patients' feelings of being believed, and thereby acceptance of the diagnosis.3."Getting an explanation that makes sense": Some participants identified connections between their personal histories and their seizures and became seizure-free. Others found that the explanatory models gave personal meaning, but did not become seizure-free, while a few continued to doubt whether NES was the correct diagnosis., Conclusion: Being believed was the most elemental factor for coping with the condition. Using a biopsychosocial approach to explain the diagnosis may facilitate identification with the explanatory models, and thus acceptance of the diagnosis., (Copyright © 2014 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.)