Pub Date : 2026-03-01Epub Date: 2026-01-24DOI: 10.1016/j.yebeh.2026.110911
Anna Gersamija , Georgii Kustov , Ilya Mishin , Mikhail Zinchuk , Flora Rider , Alla Guekht
Objective
To develop and validate a Russian version of the Social and Occupational Functioning Scale for Epilepsy (SOFSE), addressing the lack of a validated Russian-language instrument for assessing social functioning in people with epilepsy (PWE), despite the high prevalence of epilepsy and persistent stigma in the Russian Federation.
Methods
Following established cross-cultural adaptation guidelines, the Russian SOFSE was administered to 545 consecutively recruited adults with epilepsy (mean age 43.2 years; 53.9 % women) at a Level 2 Epilepsy Center, alongside the Hospital Anxiety and Depression Scale (HADS) and QOLIE-31. Factor structure (via confirmatory factor analysis), internal consistency (McDonald’s ω), and discriminant validity were assessed.
Results
Confirmatory factor analysis supported a unidimensional structure (RMSEA = 0.051; CFI = 0.955; TLI = 0.946). McDonald’s ω coefficients ranged from 0.51 (‘With a paying job’) to 0.80 (‘Instrumental Living Skills’), indicating adequate internal consistency overall, though somewhat lower for the employment-related subscale. Cluster analysis identified two groups with differential functional impairment (n = 352 vs. 193). Individuals in the impaired cluster demonstrated significantly poorer quality of life (QOLIE-31 total: 45.1 ± 29.5 vs. 61.9 ± 14.9; p < 0.001) and higher levels of depressive (HADS-D: 8.4 ± 4.1 vs. 4.65 ± 3.3; p < 0.001) and anxiety symptoms (HADS-A: 9.5 ± 4.4 vs. 6.4 ± 4.1; p < 0.001).
Conclusions
The Russian SOFSE shows overall adequate psychometric properties and is a clinically feasible instrument for assessing social functioning in PWE, although reliability was somewhat weaker for leisure and work-related items. Its strong association with depression and quality of life highlights the importance of routinely screening for psychiatric comorbidities – particularly depression – and integrating biopsychosocial interventions (e.g., psychological support, rehabilitation) to mitigate functional decline.
{"title":"The social and occupational functioning Scale for epilepsy (SOFSE): Russian adaptation and psychometric performance in adults with epilepsy","authors":"Anna Gersamija , Georgii Kustov , Ilya Mishin , Mikhail Zinchuk , Flora Rider , Alla Guekht","doi":"10.1016/j.yebeh.2026.110911","DOIUrl":"10.1016/j.yebeh.2026.110911","url":null,"abstract":"<div><h3>Objective</h3><div>To develop and validate a Russian version of the Social and Occupational Functioning Scale for Epilepsy (SOFSE), addressing the lack of a validated Russian-language instrument for assessing social functioning in people with epilepsy (PWE), despite the high prevalence of epilepsy and persistent stigma in the Russian Federation.</div></div><div><h3>Methods</h3><div>Following established cross-cultural adaptation guidelines, the Russian SOFSE was administered to 545 consecutively recruited adults with epilepsy (mean age 43.2 years; 53.9 % women) at a Level 2 Epilepsy Center, alongside the Hospital Anxiety and Depression Scale (HADS) and QOLIE-31. Factor structure (via confirmatory factor analysis), internal consistency (McDonald’s ω), and discriminant validity were assessed.</div></div><div><h3>Results</h3><div>Confirmatory factor analysis supported a unidimensional structure (RMSEA = 0.051; CFI = 0.955; TLI = 0.946). McDonald’s ω coefficients ranged from 0.51 (‘With a paying job’) to 0.80 (‘Instrumental Living Skills’), indicating adequate internal consistency overall, though somewhat lower for the employment-related subscale. Cluster analysis identified two groups with differential functional impairment (n = 352 vs. 193). Individuals in the impaired cluster demonstrated significantly poorer quality of life (QOLIE-31 total: 45.1 ± 29.5 vs. 61.9 ± 14.9; p < 0.001) and higher levels of depressive (HADS-D: 8.4 ± 4.1 vs. 4.65 ± 3.3; p < 0.001) and anxiety symptoms (HADS-A: 9.5 ± 4.4 vs. 6.4 ± 4.1; p < 0.001).</div></div><div><h3>Conclusions</h3><div>The Russian SOFSE shows overall adequate psychometric properties and is a clinically feasible instrument for assessing social functioning in PWE, although reliability was somewhat weaker for leisure and work-related items. Its strong association with depression and quality of life highlights the importance of routinely screening for psychiatric comorbidities – particularly depression – and integrating biopsychosocial interventions (e.g., psychological support, rehabilitation) to mitigate functional decline.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"176 ","pages":"Article 110911"},"PeriodicalIF":2.3,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146035066","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-03-01Epub Date: 2026-01-23DOI: 10.1016/j.yebeh.2025.110803
Patrizia Gabriella Ianes , Rose Martini , Silvia Frazzetta , Yann Bertholom , Maria Giulia Montecchi , Valentina De Luca , Simone Di Lisa , Costanza Cutrona , Federica Moriconi , Michela Quintiliani , Simona Borroni , Filomena Rita Rega , Daniela Pia Rosaria Chieffo , Domenica Immacolata Battaglia
Introduction
The Cognitive Orientation to Occupational Performance (CO-OP) Approach, a problem-solving intervention process, has been shown to improve activity performance in children with Dravet Syndrome (DS). However, some individuals with DS have cognitive, language and/or behavioral deficits that preclude their ability to participate in the problem-solving process. To date, the CO-OP Approach has never been applied to parents with the goal of enhancing children/adolescent’s performance.
Objective
Explore the feasibility of a telerehabilitation-based CO-OP Approach with parents of individuals with DS to improve their child/adolescent’s performance in daily activities.
Methods
A quasi-experimental single group design with pretest-post-test and 1-month follow-up was used with 9 parents of children/adolescents with DS (aged 9–18 years), who received eight online CO-OP sessions. Five goals were chosen, three of which were treated. Parents rated performance and satisfaction on the Canadian Occupational Performance Measure (COPM). Activity performance was rated using the Performance Quality Rating Scale (PQRS). Wilcoxon signed-rank tests were conducted to assess intervention changes.
Results
COPM results, for trained and untrained goals, for both performance and satisfaction, improved significantly at post and follow-up. PQRS results for trained goals improved significantly at post and follow-up. Positive trends were also observed for untrained goals, but significance was achieved only at follow-up.
Conclusion
These findings provide preliminary evidence that the CO-OP Approach can be implemented with parents to improve their child/adolescent’s performance on both trained and untrained goals.
{"title":"Cognitive Orientation to daily Occupational Performance Approach using telerehabilitation with parents to improve performance issues in children/adolescents with Dravet Syndrome","authors":"Patrizia Gabriella Ianes , Rose Martini , Silvia Frazzetta , Yann Bertholom , Maria Giulia Montecchi , Valentina De Luca , Simone Di Lisa , Costanza Cutrona , Federica Moriconi , Michela Quintiliani , Simona Borroni , Filomena Rita Rega , Daniela Pia Rosaria Chieffo , Domenica Immacolata Battaglia","doi":"10.1016/j.yebeh.2025.110803","DOIUrl":"10.1016/j.yebeh.2025.110803","url":null,"abstract":"<div><h3>Introduction</h3><div>The Cognitive Orientation to Occupational Performance (CO-OP) Approach, a problem-solving intervention process, has been shown to improve activity performance in children with Dravet Syndrome (DS). However, some individuals with DS have cognitive, language and/or behavioral deficits that preclude their ability to participate in the problem-solving process. To date, the CO-OP Approach has never been applied to parents with the goal of enhancing children/adolescent’s performance.</div></div><div><h3>Objective</h3><div>Explore the feasibility of a telerehabilitation-based CO-OP Approach with parents of individuals with DS to improve their child/adolescent’s performance in daily activities.</div></div><div><h3>Methods</h3><div>A quasi-experimental single group design with pretest-post-test and 1-month follow-up was used with 9 parents of children/adolescents with DS (aged 9–18 years), who received eight online CO-OP sessions. Five goals were chosen, three of which were treated. Parents rated performance and satisfaction on the Canadian Occupational Performance Measure (COPM). Activity performance was rated using the Performance Quality Rating Scale (PQRS). Wilcoxon signed-rank tests were conducted to assess intervention changes.</div></div><div><h3>Results</h3><div>COPM results, for trained and untrained goals, for both performance and satisfaction, improved significantly at post and follow-up. PQRS results for trained goals improved significantly at post and follow-up. Positive trends were also observed for untrained goals, but significance was achieved only at follow-up.</div></div><div><h3>Conclusion</h3><div>These findings provide preliminary evidence that the CO-OP Approach can be implemented with parents to improve their child/adolescent’s performance on both trained and untrained goals.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"176 ","pages":"Article 110803"},"PeriodicalIF":2.3,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146035131","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-03-01Epub Date: 2026-01-22DOI: 10.1016/j.yebeh.2026.110906
Jana Amlerova , Viktoria Pytelova , Francesco Angelucci , Ross Andel , Jakub Hort , Alena Javurkova , Petr Marusic
To examine whether patients with unilateral temporal lobe epilepsy (TLE) show deficits in recognizing emotions from facial expressions and vocal prosody, and whether these impairments differ by seizure focus or surgical status.
Methods:
Thirty-four patients with TLE were evaluated before or after temporal lobe resection for drug-resistant epilepsy. Thirty right-handed healthy controls without neurological or psychiatric history were included. Emotion recognition was assessed using the Emotion Recognition Test (ERT), consisting of a Facial ERT (adapted from Ekman and Friesen’s facial expression set) and a Prosody ERT developed in collaboration with professional actors using two neutral Czech sentences. Both subtests included five emotions: anger, disgust, fear, happiness, and sadness.
Results:
TLE patients showed a general impairment in emotion recognition across both modalities. Total prosody and facial emotion scores were significantly lower than in controls. Prosody deficits and facial emotion scores were independent of age, disease duration, and education. No significant differences were found between right and left TLE, or between pre- and postoperative groups.
Significance:
Deficits in emotion recognition from face and voice in patients with TLE were not lateralized and did not differ between pre- and postoperative TLE groups. This may indicate persistent socio-emotional processing abnormalities that may contribute to the social and behavioral difficulties observed in TLE people. Longitudinal studies are needed in this field.
{"title":"Emotion recognition deficits in temporal lobe epilepsy are non-lateralized and independent of surgery","authors":"Jana Amlerova , Viktoria Pytelova , Francesco Angelucci , Ross Andel , Jakub Hort , Alena Javurkova , Petr Marusic","doi":"10.1016/j.yebeh.2026.110906","DOIUrl":"10.1016/j.yebeh.2026.110906","url":null,"abstract":"<div><div>To examine whether patients with unilateral temporal lobe epilepsy (TLE) show deficits in recognizing emotions from facial expressions and vocal prosody, and whether these impairments differ by seizure focus or surgical status.</div></div><div><h3>Methods:</h3><div>Thirty-four patients with TLE were evaluated before or after temporal lobe resection for drug-resistant epilepsy. Thirty right-handed healthy controls without neurological or psychiatric history were included. Emotion recognition was assessed using the Emotion Recognition Test (ERT), consisting of a Facial ERT (adapted from Ekman and Friesen’s facial expression set) and a Prosody ERT developed in collaboration with professional actors using two neutral Czech sentences. Both subtests included five emotions: anger, disgust, fear, happiness, and sadness.</div></div><div><h3>Results:</h3><div>TLE patients showed a general impairment in emotion recognition across both modalities. Total prosody and facial emotion scores were significantly lower than in controls. Prosody deficits and facial emotion scores were independent of age, disease duration, and education. No significant differences were found between right and left TLE, or between pre- and postoperative groups.</div></div><div><h3>Significance:</h3><div>Deficits in emotion recognition from face and voice in patients with TLE were not lateralized and did not differ between pre- and postoperative TLE groups. This may indicate persistent socio-emotional processing abnormalities that may contribute to the social and behavioral difficulties observed in TLE people. Longitudinal studies are needed in this field.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"176 ","pages":"Article 110906"},"PeriodicalIF":2.3,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146035069","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-03-01Epub Date: 2026-01-23DOI: 10.1016/j.yebeh.2026.110910
Barbara Zuro Jakovac , David Hevey , Phillip Coey , Clare Harris , Gary Byrne
This study explored differences in illness perceptions, coping, and psychosocial outcomes in children with functional neurological disorders (FND) and epilepsy. It also examined moderating and mediating role of coping between illness perceptions and psychosocial outcomes.
A cross-sectional design was used. Thirty-three children with FND and thirty-two with epilepsy completed measures of illness perceptions, coping, anxiety, depression, and health-related quality of life.
Children with FND reported more threatening illness perceptions, higher levels of anxiety and depression, and poorer quality of life. In both groups, threatening illness perceptions were positively correlated with anxiety, and negatively with quality of life. A positive correlation between illness perceptions and depression was found only among children with FND. Coping moderated these relationships differently across groups. In the FND group, it moderated the association between illness perceptions and quality of life, whereas in the epilepsy group, it moderated the association between illness perceptions and depression.
These findings highlight the importance of addressing illness perceptions and supporting children to use coping strategies they find helpful. Moreover, screening for illness perceptions and coping may help identify the most vulnerable children and inform treatment targets.
{"title":"Illness Perception, Coping, and psychosocial outcomes in children with functional neurological disorders compared to children with epilepsy","authors":"Barbara Zuro Jakovac , David Hevey , Phillip Coey , Clare Harris , Gary Byrne","doi":"10.1016/j.yebeh.2026.110910","DOIUrl":"10.1016/j.yebeh.2026.110910","url":null,"abstract":"<div><div>This study explored differences in illness perceptions, coping, and psychosocial outcomes in children with functional neurological disorders (FND) and epilepsy. It also examined moderating and mediating role of coping between illness perceptions and psychosocial outcomes.</div><div>A cross-sectional design was used. Thirty-three children with FND and thirty-two with epilepsy completed measures of illness perceptions, coping, anxiety, depression, and health-related quality of life.</div><div>Children with FND reported more threatening illness perceptions, higher levels of anxiety and depression, and poorer quality of life. In both groups, threatening illness perceptions were positively correlated with anxiety, and negatively with quality of life. A positive correlation between illness perceptions and depression was found only among children with FND. Coping moderated these relationships differently across groups. In the FND group, it moderated the association between illness perceptions and quality of life, whereas in the epilepsy group, it moderated the association between illness perceptions and depression.</div><div>These findings highlight the importance of addressing illness perceptions and supporting children to use coping strategies they find helpful. Moreover, screening for illness perceptions and coping may help identify the most vulnerable children and inform treatment targets.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"176 ","pages":"Article 110910"},"PeriodicalIF":2.3,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146035088","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Many women with epilepsy (WWE) navigate complex decisions regarding their reproductive health. In order to support these women throughout the stages of preconception to postpartum, it is important they are equipped with the relevant information and resources. The current study used an inductive qualitative method to understand the experiences and perspectives of WWE navigating health information across the stages of preconception to postpartum in Ireland. Thirty-two WWE aged 20–50 years, who have received healthcare in Ireland, participated in an online narrative interview. Responses were analysed using Reflexive Thematic Analysis. WWE reported several important factors related to their information needs. Three themes were developed: 1) what I need to know, to know what to expect (i.e., WWE’s need for information earlier to make informed decisions), 2) my information is impacted by access and support, and 3) my experiences impact whether I trust health information. Strategies to improve the timing and delivery of resources should be prioritised to increase the overall quality of communication of information for WWE to ensure their health needs are met.
{"title":"Exploring health information and resource needs of women with epilepsy in Ireland from preconception to postpartum: A qualitative study","authors":"Jade Parnell , Veronica Lambert , Sinéad Murphy , Fergal O’Shaughnessy , Aisling Walsh","doi":"10.1016/j.yebeh.2025.110825","DOIUrl":"10.1016/j.yebeh.2025.110825","url":null,"abstract":"<div><div>Many women with epilepsy (WWE) navigate complex decisions regarding their reproductive health. In order to support these women throughout the stages of preconception to postpartum, it is important they are equipped with the relevant information and resources. The current study used an inductive qualitative method to understand the experiences and perspectives of WWE navigating health information across the stages of preconception to postpartum in Ireland. Thirty-two WWE aged 20–50 years, who have received healthcare in Ireland, participated in an online narrative interview. Responses were analysed using Reflexive Thematic Analysis. WWE reported several important factors related to their information needs. Three themes were developed: 1) what I need to know, to know what to expect (i.e., WWE’s need for information earlier to make informed decisions), 2) my information is impacted by access and support, and 3) my experiences impact whether I trust health information. Strategies to improve the timing and delivery of resources should be prioritised to increase the overall quality of communication of information for WWE to ensure their health needs are met.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"176 ","pages":"Article 110825"},"PeriodicalIF":2.3,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146035127","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-03-01Epub Date: 2026-02-03DOI: 10.1016/j.yebeh.2025.110875
Theodore S. Aliyianis , Spencer Finn , Karla Batista Garcia-Ramo , Brooke C. Beattie , Lysa Boissé Lomax , Garima Shukla , Stephen H. Scott , Gavin P. Winston
Background
Cognitive dysfunction is common in people with epilepsy (PWE). Although expectations exist for deficits based on diagnosis, phenotypic variation of cognitive deficits is observed within epilepsy subtypes. Classification by severity and type of cognitive deficits has been shown across multiple studies of people with temporal lobe epilepsy (TLE). In this study, we replicate these findings using robotic assessment in TLE and apply the same method in genetic generalized epilepsy (GGE) to uncover potential cognitive phenotypes.
Method
Participants with TLE and GGE were recruited to participate in robotic assessment battery of neurocognitive function. We used 7 task scores to form clusters that includes functions from various cognitive and motor domains. Calinski-Harabasz method seeded at zero was used to find the optimal value of c, and fuzzy C-means clustering was used to assess the cluster membership from the data in c-groups.
Results
We found 3 clusters among TLE (n = 33): minimal deficits (45 % of participants with TLE), partial deficits (27 %), and global deficits (27 %). Likewise, we found 3 clusters among GGE (n = 25): memory and executive deficits (40 % of participants with GGE), processing speed deficits (36 %), and complex motor deficits (24 %).
Conclusions
Robotic assessment can be used with clustering methods to classify cognitive dysfunction in epilepsy. These clusters show similar patterns to previous research, which suggests that robotic assessment can distinguish the cognitive phenotypes of PWE.
{"title":"Identification of cognitive phenotypes in temporal lobe epilepsy and genetic generalized epilepsy using robotic assessment","authors":"Theodore S. Aliyianis , Spencer Finn , Karla Batista Garcia-Ramo , Brooke C. Beattie , Lysa Boissé Lomax , Garima Shukla , Stephen H. Scott , Gavin P. Winston","doi":"10.1016/j.yebeh.2025.110875","DOIUrl":"10.1016/j.yebeh.2025.110875","url":null,"abstract":"<div><h3>Background</h3><div>Cognitive dysfunction is common in people with epilepsy (PWE). Although expectations exist for deficits based on diagnosis, phenotypic variation of cognitive deficits is observed within epilepsy subtypes. Classification by severity and type of cognitive deficits has been shown across multiple studies of people with temporal lobe epilepsy (TLE). In this study, we replicate these findings using robotic assessment in TLE and apply the same method in genetic generalized epilepsy (GGE) to uncover potential cognitive phenotypes.</div></div><div><h3>Method</h3><div>Participants with TLE and GGE were recruited to participate in robotic assessment battery of neurocognitive function. We used 7 task scores to form clusters that includes functions from various cognitive and motor domains. Calinski-Harabasz method seeded at zero was used to find the optimal value of c, and fuzzy C-means clustering was used to assess the cluster membership from the data in c-groups.</div></div><div><h3>Results</h3><div>We found 3 clusters among TLE (n = 33): minimal deficits (45 % of participants with TLE), partial deficits (27 %), and global deficits (27 %). Likewise, we found 3 clusters among GGE (n = 25): memory and executive deficits (40 % of participants with GGE), processing speed deficits (36 %), and complex motor deficits (24 %).</div></div><div><h3>Conclusions</h3><div>Robotic assessment can be used with clustering methods to classify cognitive dysfunction in epilepsy. These clusters show similar patterns to previous research, which suggests that robotic assessment can distinguish the cognitive phenotypes of PWE.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"176 ","pages":"Article 110875"},"PeriodicalIF":2.3,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146112618","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-03-01Epub Date: 2026-01-27DOI: 10.1016/j.yebeh.2025.110831
Danya Kaye , Rebecca Burns , Cédric Laloyaux , Michelle Manzo , Andrea L. Wilkinson , Tanya Bhatia , Shalee Cunneen , Susan Linn , Shelly Meitzler , Jesús Eric Piña-Garza , Joseph I. Sirven
Objectives
To describe the experiences of people with epilepsy (PwE) with prolonged seizures (PS) and their caregivers, identify unmet needs, determine greatest burdens, and assess perceived impact of PS on quality of life (QoL).
Methods
Mixed methods research on PwE and caregivers (∼15-min web-survey; 90–120-min interviews); September 2023-January 2024. This study included US-based PwE age ≥ 18 years and adult caregivers of PwE age ≥ 12 years; PwE were currently experiencing/had history of PS (typically lasting ≥ 2 min/usually not stopping on their own/worsening over time).
Results
Living with PS has a profound negative impact on perceived QoL for PwE and caregivers (n = 35) across areas including work/career, social life/relationships, physical/cognitive impacts, and mental health/emotional wellbeing (highest impact reported). Twenty-one (60 %) participants reported receiving medication or therapy to manage their mental health. Increased burden of PS was associated with increased frequency and emotional impact of emergency response; 25 (71 %) participants reported they/the PwE they care for were currently experiencing PS. PwE currently experiencing PS were 3.6-times more likely to call an ambulance than those not currently experiencing PS. PwE with PS reported post-ictal recovery as physically/cognitively/emotionally challenging; 29 (83 %) participants correlated seizure duration with longer recovery time; even outside of hospitalization/emergency healthcare, reported recovery time from PS was 0.5–3 days. Participants who did not report such correlation typically reported shorter recovery (<few hours) and well-controlled seizures.
Conclusions
The negative health impact and burden of PS on PwE and caregivers was profound. Better social, emotional, and psychological support is needed for PwE with PS and their families.
{"title":"Does seizure duration matter? A quantitative and qualitative study on the burden and unmet needs of prolonged seizures in people living with epilepsy and their caregivers","authors":"Danya Kaye , Rebecca Burns , Cédric Laloyaux , Michelle Manzo , Andrea L. Wilkinson , Tanya Bhatia , Shalee Cunneen , Susan Linn , Shelly Meitzler , Jesús Eric Piña-Garza , Joseph I. Sirven","doi":"10.1016/j.yebeh.2025.110831","DOIUrl":"10.1016/j.yebeh.2025.110831","url":null,"abstract":"<div><h3>Objectives</h3><div>To describe the experiences of people with epilepsy (PwE) with prolonged seizures (PS) and their caregivers, identify unmet needs, determine greatest burdens, and assess perceived impact of PS on quality of life (QoL).</div></div><div><h3>Methods</h3><div>Mixed methods research on PwE and caregivers (∼15-min web-survey; 90–120-min interviews); September 2023-January 2024. This study included US-based PwE age ≥ 18 years and adult caregivers of PwE age ≥ 12 years; PwE were currently experiencing/had history of PS (typically lasting ≥ 2 min/usually not stopping on their own/worsening over time).</div></div><div><h3>Results</h3><div>Living with PS has a profound negative impact on perceived QoL for PwE and caregivers (n = 35) across areas including work/career, social life/relationships, physical/cognitive impacts, and mental health/emotional wellbeing (highest impact reported). Twenty-one (60 %) participants reported receiving medication or therapy to manage their mental health. Increased burden of PS was associated with increased frequency and emotional impact of emergency response; 25 (71 %) participants reported they/the PwE they care for were currently experiencing PS. PwE currently experiencing PS were 3.6-times more likely to call an ambulance than those not currently experiencing PS. PwE with PS reported post-ictal recovery as physically/cognitively/emotionally challenging; 29 (83 %) participants correlated seizure duration with longer recovery time; even outside of hospitalization/emergency healthcare, reported recovery time from PS was 0.5–3 days. Participants who did not report such correlation typically reported shorter recovery (<few hours) and well-controlled seizures.</div></div><div><h3>Conclusions</h3><div>The negative health impact and burden of PS on PwE and caregivers was profound. Better social, emotional, and psychological support is needed for PwE with PS and their families.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"176 ","pages":"Article 110831"},"PeriodicalIF":2.3,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146073903","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
<div><h3>Purpose</h3><div>Epilepsy genetics is a rapidly evolving field focused on identifying new epilepsy-related genes, enhancing our understanding of the mechanisms underlying epilepsy, and developing precision medicine approaches for targeted treatments. However, genetic testing raises ethical, legal, and social issues for people with epilepsy and their families. This review summarizes the implications of genetic testing in epilepsy, focusing on the ethical dilemmas, societal impacts, and legal considerations in clinical practice. This manuscript is structured as a narrative review that integrates real-world clinical case vignettes to illustrate how ethical, social, and legal challenges arise in everyday epilepsy genetics practice. Our aim is to synthesize practical ethical considerations for clinicians working in diverse healthcare settings.</div></div><div><h3>Methods</h3><div>We conducted a narrative review of the current literature and integrated illustrative cases to examine the ethical, social, and legal dimensions of epilepsy genetics.</div></div><div><h3>Results</h3><div>Ethical issues in epilepsy genetic testing include ensuring informed consent, respecting autonomy, protecting confidentiality and privacy, and balancing the interests of individuals, parents, and society, particularly in the case of genetic testing for minors. Informed consent requires that patients fully understand the risks, benefits, and limitations of testing, including its potential health, emotional, and family impacts. Healthcare professionals must inform patients about the implications of genetic test results and potential risks to family members. Clear communication helps patients understand the information, encourages family discussions, and supports informed consent for disclosure. Disclosure of genetic information to family members without patient consent may be justified under certain conditions. Genetic testing for epilepsy can lead to significant social impacts, such as anxiety, stress, and depression. It may also worsen stigma, discrimination, and social isolation already associated with epilepsy. The concept of “courtesy stigma” may arise when epilepsy is perceived as a hereditary condition, leading to stigma extending beyond the affected individual to their family members. Genetic test results could be used to discriminate against individuals in employment or insurance settings. Genetic testing for epilepsy raises ethical concerns grounded in the principle of justice, particularly equitable access to testing, which may subsequently require legal and policy interventions.</div></div><div><h3>Conclusion</h3><div>While genetic testing for epilepsy offers substantial benefits for improving treatment and enabling early intervention, it also raises significant ethical, legal, and social challenges for individuals with epilepsy and their families. Robust legal and ethical frameworks are essential to protect patient rights and to maximize the benefits of ge
{"title":"Beyond the genome: Ethical, social and legal implications of epilepsy genetics","authors":"Parthasarathy Satishchandra , Birrie Deresse , Priya Ranganath","doi":"10.1016/j.yebeh.2026.110922","DOIUrl":"10.1016/j.yebeh.2026.110922","url":null,"abstract":"<div><h3>Purpose</h3><div>Epilepsy genetics is a rapidly evolving field focused on identifying new epilepsy-related genes, enhancing our understanding of the mechanisms underlying epilepsy, and developing precision medicine approaches for targeted treatments. However, genetic testing raises ethical, legal, and social issues for people with epilepsy and their families. This review summarizes the implications of genetic testing in epilepsy, focusing on the ethical dilemmas, societal impacts, and legal considerations in clinical practice. This manuscript is structured as a narrative review that integrates real-world clinical case vignettes to illustrate how ethical, social, and legal challenges arise in everyday epilepsy genetics practice. Our aim is to synthesize practical ethical considerations for clinicians working in diverse healthcare settings.</div></div><div><h3>Methods</h3><div>We conducted a narrative review of the current literature and integrated illustrative cases to examine the ethical, social, and legal dimensions of epilepsy genetics.</div></div><div><h3>Results</h3><div>Ethical issues in epilepsy genetic testing include ensuring informed consent, respecting autonomy, protecting confidentiality and privacy, and balancing the interests of individuals, parents, and society, particularly in the case of genetic testing for minors. Informed consent requires that patients fully understand the risks, benefits, and limitations of testing, including its potential health, emotional, and family impacts. Healthcare professionals must inform patients about the implications of genetic test results and potential risks to family members. Clear communication helps patients understand the information, encourages family discussions, and supports informed consent for disclosure. Disclosure of genetic information to family members without patient consent may be justified under certain conditions. Genetic testing for epilepsy can lead to significant social impacts, such as anxiety, stress, and depression. It may also worsen stigma, discrimination, and social isolation already associated with epilepsy. The concept of “courtesy stigma” may arise when epilepsy is perceived as a hereditary condition, leading to stigma extending beyond the affected individual to their family members. Genetic test results could be used to discriminate against individuals in employment or insurance settings. Genetic testing for epilepsy raises ethical concerns grounded in the principle of justice, particularly equitable access to testing, which may subsequently require legal and policy interventions.</div></div><div><h3>Conclusion</h3><div>While genetic testing for epilepsy offers substantial benefits for improving treatment and enabling early intervention, it also raises significant ethical, legal, and social challenges for individuals with epilepsy and their families. Robust legal and ethical frameworks are essential to protect patient rights and to maximize the benefits of ge","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"176 ","pages":"Article 110922"},"PeriodicalIF":2.3,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146073930","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-03-01Epub Date: 2026-02-13DOI: 10.1016/j.yebeh.2025.110695
Kenneth Ong , Michael A Rizzuto , Maggie Hou , Annika Weir , Chantelle Hrazdil , Ash Singhal , Mostafa Fatehi
Background
Vagus nerve stimulation (VNS) is an established therapy for refractory epilepsy, traditionally implanted on the left to avoid potential cardiac complications attributed to right-sided placement (R-VNS). These concerns are largely based on animal models, with limited human evidence.
Methods
To gain a deeper understanding of the field, we conducted a systematic review of all published cases of R-VNS and a retrospective review of all patients in our quaternary neurosurgical center (Vancouver General Hospital) who underwent R-VNS.
Results
The review identified nine studies involving 53 patients. Transient cardiac abnormalities occurred in four patients. Ten patients experienced non-cardiac side effects, typically wheezing or other respiratory side effects, with three requiring device deactivations. Seizure control was comparable in 74.2% of patients. Our institutional series of seven patients identified no cardiac complications. Three experienced transient non-cardiac symptoms, and one experienced hoarseness and stridor requiring stimulation adjustment. Six patients had prior L-VNS, with R-VNS providing similar seizure control in four cases. Two instances of unreliable heart rate detection by VNS were reported in our cohort.
Conclusion
This study presents an updated systematic review and institutional case series to better characterize the safety and efficacy of R-VNS. Although traditionally avoided due to cardiac concerns, symptomatic cardiac complications with R-VNS were not regularly documented compared to L-VNS. Instances of unreliable heart rate detection limited the value of cardiac auto-stimulation and should be further investigated. R-VNS appears safe and effective in select patients, though larger studies are needed to clarify long-term safety, and respiratory side effects have been described.
{"title":"Right vagal nerve stimulation for epilepsy – case series and systematic review of the literature","authors":"Kenneth Ong , Michael A Rizzuto , Maggie Hou , Annika Weir , Chantelle Hrazdil , Ash Singhal , Mostafa Fatehi","doi":"10.1016/j.yebeh.2025.110695","DOIUrl":"10.1016/j.yebeh.2025.110695","url":null,"abstract":"<div><h3>Background</h3><div>Vagus nerve stimulation (VNS) is an established therapy for refractory epilepsy, traditionally implanted on the left to avoid potential cardiac complications attributed to right-sided placement (R-VNS). These concerns are largely based on animal models, with limited human evidence.</div></div><div><h3>Methods</h3><div>To gain a deeper understanding of the field, we conducted a systematic review of all published cases of R-VNS and a retrospective review of all patients in our quaternary neurosurgical center (Vancouver General Hospital) who underwent R-VNS.</div></div><div><h3>Results</h3><div>The review identified nine studies involving 53 patients. Transient cardiac abnormalities occurred in four patients. Ten patients experienced non-cardiac side effects, typically wheezing or other respiratory side effects, with three requiring device deactivations. Seizure control was comparable in 74.2% of patients. Our institutional series of seven patients identified no cardiac complications. Three experienced transient non-cardiac symptoms, and one experienced hoarseness and stridor requiring stimulation adjustment. Six patients had prior L-VNS, with R-VNS providing similar seizure control in four cases. Two instances of unreliable heart rate detection by VNS were reported in our cohort.</div></div><div><h3>Conclusion</h3><div>This study presents an updated systematic review and institutional case series to better characterize the safety and efficacy of R-VNS. Although traditionally avoided due to cardiac concerns, symptomatic cardiac complications with R-VNS were not regularly documented compared to L-VNS. Instances of unreliable heart rate detection limited the value of cardiac auto-stimulation and should be further investigated. R-VNS appears safe and effective in select patients, though larger studies are needed to clarify long-term safety, and respiratory side effects have been described.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"176 ","pages":"Article 110695"},"PeriodicalIF":2.3,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146197541","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-03-01Epub Date: 2026-01-17DOI: 10.1016/j.yebeh.2025.110834
Debopam Samanta , Cemal Karakas , Anthony L. Fine , Amanda W. Pong , Hyun Yong Koh , Cynthia Keator , Tobias Loddenkemper , Ismail S. Mohamed , Gozde Erdemir , Tracy Dixon-Salazar , Fábio A. Nascimento , Sonal Bhatia , Babitha Haridas , Aaron E.L. Warren , Anup D. Patel
In Lennox-Gastaut Syndrome (LGS), a severe developmental and epileptic encephalopathy, the absence of validated biomarkers limits our ability to detect disease early, predict outcomes, and guide treatment strategies. This review synthesizes advances in biomarker research spanning electrophysiological, genetic, neuroimaging, and neuroinflammatory domains. Interictal electroencephalography (EEG) patterns such as slow spike-wave (SSW) and generalized paroxysmal fast activity (GPFA) remain diagnostic hallmarks and show potential as markers of disease progression and treatment response, though further standardization and validation are needed. Genetic testing reveals pathogenic variants in a substantial subset of patients, creating opportunities for precision medicine guided by disease mechanisms. Neuroimaging approaches, including diffusion magnetic resonance imaging (MRI), fluorodeoxyglucose–positron emission tomography (FDG-PET), and EEG–functional magnetic resonance imaging (EEG-fMRI), demonstrate widespread network abnormalities that may provide prognostic or treatment-relevant insights. Circulating molecular and inflammatory markers, such as microRNAs and cytokines, also show promise but remain in early stages of investigation. Overall, the development of reliable biomarkers in LGS will require multimodal integration, multicenter validation, and the application of artificial intelligence to advance toward predictive, preventive, and personalized care.
{"title":"Biomarker discovery in Lennox-Gastaut syndrome: Advances and challenges in electrophysiological, genetic, neuroimaging, and neuroinflammatory approaches","authors":"Debopam Samanta , Cemal Karakas , Anthony L. Fine , Amanda W. Pong , Hyun Yong Koh , Cynthia Keator , Tobias Loddenkemper , Ismail S. Mohamed , Gozde Erdemir , Tracy Dixon-Salazar , Fábio A. Nascimento , Sonal Bhatia , Babitha Haridas , Aaron E.L. Warren , Anup D. Patel","doi":"10.1016/j.yebeh.2025.110834","DOIUrl":"10.1016/j.yebeh.2025.110834","url":null,"abstract":"<div><div>In Lennox-Gastaut Syndrome (LGS), a severe developmental and epileptic encephalopathy, the absence of validated biomarkers limits our ability to detect disease early, predict outcomes, and guide treatment strategies. This review synthesizes advances in biomarker research spanning electrophysiological, genetic, neuroimaging, and neuroinflammatory domains. Interictal electroencephalography (EEG) patterns such as slow spike-wave (SSW) and generalized paroxysmal fast activity (GPFA) remain diagnostic hallmarks and show potential as markers of disease progression and treatment response, though further standardization and validation are needed. Genetic testing reveals pathogenic variants in a substantial subset of patients, creating opportunities for precision medicine guided by disease mechanisms. Neuroimaging approaches, including diffusion magnetic resonance imaging (MRI), fluorodeoxyglucose–positron emission tomography (FDG-PET), and EEG–functional magnetic resonance imaging (EEG-fMRI), demonstrate widespread network abnormalities that may provide prognostic or treatment-relevant insights. Circulating molecular and inflammatory markers, such as microRNAs and cytokines, also show promise but remain in early stages of investigation. Overall, the development of reliable biomarkers in LGS will require multimodal integration, multicenter validation, and the application of artificial intelligence to advance toward predictive, preventive, and personalized care.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"176 ","pages":"Article 110834"},"PeriodicalIF":2.3,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145974352","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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