Pub Date : 2024-12-30DOI: 10.1016/j.yebeh.2024.110236
Krista Eschbach, Julia Reedy, Teneille Gofton, Margaret Gopaul, Raquel Farias-Moeller, Marissa Kellogg, Kelly Knupp, Lawrence J Hirsch, Nora Wong, Brook Dorsey Holliman
Objective: To describe the lived experience of patients with NORSE and explore quality of life (QOL) for patients and their caregivers.
Background: NORSE is a rare condition characterized by refractory status epilepticus, often of unknown cause, in a previously neurologically healthy individual. Febrile infection-related epilepsy syndrome (FIRES) is a subset of NORSE. NORSE is associated with a risk of mortality, acute morbidity, and neurocognitive sequela with limited data about the long-term impacts.
Methods: We conducted in-depth individual or dyadic semi-structured interviews with patients and caregivers. Interviews explored the long-term experiences after NORSE and its impacts on patient and caregiver QOL. Data were analyzed using a thematic content analysis approach.
Results: Fourteen interviews, comprising 5 patients and 15 caregivers, were completed between April 2023 - February 2024. The median age at NORSE onset was 17 years (IQR: 11.00 - 20.25) with a median of 5.60 years (IQR: 3.88 - 8.50) since onset. While experiences varied based on NORSE outcomes and time since onset, we identified the following themes: 1) Seizures, medication side effects, and comorbid health concerns impact patient independence and QOL; 2) Mental and behavioral health concerns compounded by loneliness and isolation impact patient QOL; 3) Friend and family relationship changes impact patient social and emotional QOL; 4) Family members take on care of the patient and experience significant life changes.
Conclusion: NORSE has significant life-altering impacts on patients and caregivers. These findings highlight a need to evaluate outcomes and provide support that extends beyond seizure management.
{"title":"Navigating life after New-onset refractory status epilepticus (NORSE) and Febrile infection-related epilepsy syndrome (FIRES): Insights from caregiver and patient interviews.","authors":"Krista Eschbach, Julia Reedy, Teneille Gofton, Margaret Gopaul, Raquel Farias-Moeller, Marissa Kellogg, Kelly Knupp, Lawrence J Hirsch, Nora Wong, Brook Dorsey Holliman","doi":"10.1016/j.yebeh.2024.110236","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110236","url":null,"abstract":"<p><strong>Objective: </strong>To describe the lived experience of patients with NORSE and explore quality of life (QOL) for patients and their caregivers.</p><p><strong>Background: </strong>NORSE is a rare condition characterized by refractory status epilepticus, often of unknown cause, in a previously neurologically healthy individual. Febrile infection-related epilepsy syndrome (FIRES) is a subset of NORSE. NORSE is associated with a risk of mortality, acute morbidity, and neurocognitive sequela with limited data about the long-term impacts.</p><p><strong>Methods: </strong>We conducted in-depth individual or dyadic semi-structured interviews with patients and caregivers. Interviews explored the long-term experiences after NORSE and its impacts on patient and caregiver QOL. Data were analyzed using a thematic content analysis approach.</p><p><strong>Results: </strong>Fourteen interviews, comprising 5 patients and 15 caregivers, were completed between April 2023 - February 2024. The median age at NORSE onset was 17 years (IQR: 11.00 - 20.25) with a median of 5.60 years (IQR: 3.88 - 8.50) since onset. While experiences varied based on NORSE outcomes and time since onset, we identified the following themes: 1) Seizures, medication side effects, and comorbid health concerns impact patient independence and QOL; 2) Mental and behavioral health concerns compounded by loneliness and isolation impact patient QOL; 3) Friend and family relationship changes impact patient social and emotional QOL; 4) Family members take on care of the patient and experience significant life changes.</p><p><strong>Conclusion: </strong>NORSE has significant life-altering impacts on patients and caregivers. These findings highlight a need to evaluate outcomes and provide support that extends beyond seizure management.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110236"},"PeriodicalIF":2.3,"publicationDate":"2024-12-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142909508","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}
Introduction: We aim to identify risk factors that predict refractory convulsive status epilepticus (RCSE) and to develop a model for early recognition of patients at high risk for RCSE.
Methods: This study involved 200 patients diagnosed with convulsive status epilepticus (CSE), of whom 73 were RCSE and 127 were non-RCSE. Variables included demographic information, lifestyle factors, medical history, comorbidities, clinical symptoms, neuroimaging characteristics, laboratory tests, and nutritional scores. A predictive model was developed through multivariable logistic regression analysis. The model's predictive performance and clinical utility were evaluated using various metrics, including the area under the receiver operating characteristic (AUROC) curve, GiViTI calibration belt, and decision curve analysis (DCA). Additionally, we performed internal five-fold cross-validation for this model.
Results: We developed a nomogram model with six predictors: age ≤ 40 years, prior history of epilepsy, presence of epileptic foci, duration of CSE > 30 min, c-reactive protein > 6 mg/L, and nutritional risk screening ≥ 3 points. Our model has a high AUROC (0.838) and good consistency (P = 0.999). In DCA, the curve of our model exhibits a positive net benefit across the entire range of threshold probabilities. Moreover, our model achieved an accuracy of 0.778 and a Kappa value of 0.519 in the five-fold cross-validation.
Conclusion: We developed an objective, simple and accessible model to assess the risk of RCSE. This model shows promise as a valuable tool for evaluating the individual risk of RCSE.
{"title":"Development of a nomogram model for early prediction of refractory convulsive status epilepticus.","authors":"Ying Wang, Zhipeng Liu, Wenting Huang, Shumin Mao, Xu Zhang, Lekai Chen, Wenqiang Fang, Pinglang Hu, Xianchai Hong, Yanru Du, Huiqin Xu","doi":"10.1016/j.yebeh.2024.110235","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110235","url":null,"abstract":"<p><strong>Introduction: </strong>We aim to identify risk factors that predict refractory convulsive status epilepticus (RCSE) and to develop a model for early recognition of patients at high risk for RCSE.</p><p><strong>Methods: </strong>This study involved 200 patients diagnosed with convulsive status epilepticus (CSE), of whom 73 were RCSE and 127 were non-RCSE. Variables included demographic information, lifestyle factors, medical history, comorbidities, clinical symptoms, neuroimaging characteristics, laboratory tests, and nutritional scores. A predictive model was developed through multivariable logistic regression analysis. The model's predictive performance and clinical utility were evaluated using various metrics, including the area under the receiver operating characteristic (AUROC) curve, GiViTI calibration belt, and decision curve analysis (DCA). Additionally, we performed internal five-fold cross-validation for this model.</p><p><strong>Results: </strong>We developed a nomogram model with six predictors: age ≤ 40 years, prior history of epilepsy, presence of epileptic foci, duration of CSE > 30 min, c-reactive protein > 6 mg/L, and nutritional risk screening ≥ 3 points. Our model has a high AUROC (0.838) and good consistency (P = 0.999). In DCA, the curve of our model exhibits a positive net benefit across the entire range of threshold probabilities. Moreover, our model achieved an accuracy of 0.778 and a Kappa value of 0.519 in the five-fold cross-validation.</p><p><strong>Conclusion: </strong>We developed an objective, simple and accessible model to assess the risk of RCSE. This model shows promise as a valuable tool for evaluating the individual risk of RCSE.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110235"},"PeriodicalIF":2.3,"publicationDate":"2024-12-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142913959","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 : 2024-12-30DOI: 10.1016/j.yebeh.2024.110242
Fettah Eren, Sumeyye Aydogmus, Furkan Oral, Mine Aleyna Saka, Aslihan Kocatas, Muhammed Mustafa Esmer, Shams Guliyeva, Mustafa Safa Cibik, Salih Emre Gungor, Kemal Oguz, Melike Somuncu, Ceren Cinar, Omer Yazgan, Nesibe Ozkaya, Adem Yildiz
Objective: The aim of this study is to evaluate the epilepsy-related knowledge and attitudes toward epilepsy in medical students. In addition, these parameters were evaluated according to national geographic regions, preclinical and clinical characteristics.
Methods: This study was a cross-sectional, observational design and it was conducted among medical students in a centrally located city, Turkey. Participants were divided into two groups as preclinical (1st, 2nd and 3rd year) and clinical (4th, 5th, and 6th year). Structured questionnaires were used to evaluate knowledge about epilepsy and attitudes toward epilepsy. All items were converted into an online format.
Results: In general, clinical students exhibited better knowledge about epilepsy than preclinical students (p = 0.001), however there was no statistical difference between groups in terms of attitudes toward epilepsy (p = 0.561). In the knowledge scale, the lowest rate was "Brain operation can be effective treatment in some patients" (43.9 %); and in the attitudes scale, the lowest rate was "I would marry someone who has epilepsy" (51.1 %). A weak negative correlation was detected between knowledge and attitudes scores (p = 0.027, r = -0.103). Scores in knowledge about epilepsy and attitude toward epilepsy were not difference in national geographic regions (p = 0.637). Knowledge score was higher in students who witnessed an epileptic seizure (p = 0.001).
Conclusion: The study demonstrated that medical students had insufficient knowledge, mainly about treatment in epilepsy. Negative attitudes, especially about marriage or dating, were detected. Students' perceptions about epilepsy could be improved with training program. Medical regular curriculum should be reorganized about this line.
{"title":"Knowledge and attitudes of preclinical and clinical medical students toward epilepsy: A cross-sectional study from Turkey.","authors":"Fettah Eren, Sumeyye Aydogmus, Furkan Oral, Mine Aleyna Saka, Aslihan Kocatas, Muhammed Mustafa Esmer, Shams Guliyeva, Mustafa Safa Cibik, Salih Emre Gungor, Kemal Oguz, Melike Somuncu, Ceren Cinar, Omer Yazgan, Nesibe Ozkaya, Adem Yildiz","doi":"10.1016/j.yebeh.2024.110242","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110242","url":null,"abstract":"<p><strong>Objective: </strong>The aim of this study is to evaluate the epilepsy-related knowledge and attitudes toward epilepsy in medical students. In addition, these parameters were evaluated according to national geographic regions, preclinical and clinical characteristics.</p><p><strong>Methods: </strong>This study was a cross-sectional, observational design and it was conducted among medical students in a centrally located city, Turkey. Participants were divided into two groups as preclinical (1st, 2nd and 3rd year) and clinical (4th, 5th, and 6th year). Structured questionnaires were used to evaluate knowledge about epilepsy and attitudes toward epilepsy. All items were converted into an online format.</p><p><strong>Results: </strong>In general, clinical students exhibited better knowledge about epilepsy than preclinical students (p = 0.001), however there was no statistical difference between groups in terms of attitudes toward epilepsy (p = 0.561). In the knowledge scale, the lowest rate was \"Brain operation can be effective treatment in some patients\" (43.9 %); and in the attitudes scale, the lowest rate was \"I would marry someone who has epilepsy\" (51.1 %). A weak negative correlation was detected between knowledge and attitudes scores (p = 0.027, r = -0.103). Scores in knowledge about epilepsy and attitude toward epilepsy were not difference in national geographic regions (p = 0.637). Knowledge score was higher in students who witnessed an epileptic seizure (p = 0.001).</p><p><strong>Conclusion: </strong>The study demonstrated that medical students had insufficient knowledge, mainly about treatment in epilepsy. Negative attitudes, especially about marriage or dating, were detected. Students' perceptions about epilepsy could be improved with training program. Medical regular curriculum should be reorganized about this line.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110242"},"PeriodicalIF":2.3,"publicationDate":"2024-12-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142909503","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 : 2024-12-30DOI: 10.1016/j.yebeh.2024.110232
Oruç Şahin, Muzaffer Güneş
Objectives: Status epilepticus (SE) is a severe neurological condition associated with a poor prognosis. Refractory status epilepticus (RSE) is a treatment-resistant form of SE with an even worse prognosis. The exact mechanisms underlying the development of RSE are not fully understood. The aim of this study was to investigate the factors contributing to the development of RSE in SE patients and to identify predictors of RSE occurrence.
Methods: This retrospective study was conducted on patients diagnosed with SE and RSE between 2014 and 2024. Demographic information, comorbid conditions, and blood sample data of the patients were recorded for statistical analysis. The statistical analyses used included the Mann-Whitney U test, Chi-square test, Fisher's exact test, ROC curve analysis, and logistic regression.
Results: A total of 82 SE patients were included in the study. Of these, 44 were non-RSE patients (control group), and 38 were RSE patients. Significant differences were observed between the groups in terms of median age (p = 0.001), blood glucose level (p = 0.023), pan-immune inflammation value (PIV) (p = 0.002), Monocyte/Lymphocyte Ratio (MLR) (p = 0.009), Neutrophil/Albumin Ratio (NAR) (p = 0.003), Systemic Immune Inflammation Index (SII) (p = 0.013), Eosinophil/Lymphocyte Ratio (ELR) (p = 0.016), Eosinophil/Neutrophil Ratio (ENR) (p = 0.006), and Eosinophil/Monocyte Ratio (EMR) (p = 0.002). The multivariate logistic regression model identified the presence of arterial hypertension as the only factor significantly associated with the development of RSE (p < 0.001). In the ROC curve analysis, PIV (AUC = 0.696) and NAR (AUC = 0.689) were found to be predictive factors for RSE.
Conclusions: The findings obtained in the current study suggest that systemic inflammation and arterial hypertension may be associated with the progression of SE to RSE. Further research is needed to confirm these findings and integrate them into routine clinical practice.
{"title":"Factors in the development of refractory status epilepticus in status epilepticus patients.","authors":"Oruç Şahin, Muzaffer Güneş","doi":"10.1016/j.yebeh.2024.110232","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110232","url":null,"abstract":"<p><strong>Objectives: </strong>Status epilepticus (SE) is a severe neurological condition associated with a poor prognosis. Refractory status epilepticus (RSE) is a treatment-resistant form of SE with an even worse prognosis. The exact mechanisms underlying the development of RSE are not fully understood. The aim of this study was to investigate the factors contributing to the development of RSE in SE patients and to identify predictors of RSE occurrence.</p><p><strong>Methods: </strong>This retrospective study was conducted on patients diagnosed with SE and RSE between 2014 and 2024. Demographic information, comorbid conditions, and blood sample data of the patients were recorded for statistical analysis. The statistical analyses used included the Mann-Whitney U test, Chi-square test, Fisher's exact test, ROC curve analysis, and logistic regression.</p><p><strong>Results: </strong>A total of 82 SE patients were included in the study. Of these, 44 were non-RSE patients (control group), and 38 were RSE patients. Significant differences were observed between the groups in terms of median age (p = 0.001), blood glucose level (p = 0.023), pan-immune inflammation value (PIV) (p = 0.002), Monocyte/Lymphocyte Ratio (MLR) (p = 0.009), Neutrophil/Albumin Ratio (NAR) (p = 0.003), Systemic Immune Inflammation Index (SII) (p = 0.013), Eosinophil/Lymphocyte Ratio (ELR) (p = 0.016), Eosinophil/Neutrophil Ratio (ENR) (p = 0.006), and Eosinophil/Monocyte Ratio (EMR) (p = 0.002). The multivariate logistic regression model identified the presence of arterial hypertension as the only factor significantly associated with the development of RSE (p < 0.001). In the ROC curve analysis, PIV (AUC = 0.696) and NAR (AUC = 0.689) were found to be predictive factors for RSE.</p><p><strong>Conclusions: </strong>The findings obtained in the current study suggest that systemic inflammation and arterial hypertension may be associated with the progression of SE to RSE. Further research is needed to confirm these findings and integrate them into routine clinical practice.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110232"},"PeriodicalIF":2.3,"publicationDate":"2024-12-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142909445","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 : 2024-12-30DOI: 10.1016/j.yebeh.2024.110243
Jaime Carrizosa-Moog
Introduction: The influence of the Enlightenment is evident with the mention of Herman Boerhave. The strong European influence draws attention with minimal expression of the social and medical concepts of pre-Colombian cultures such as the Aztec and Mayan.
Methods: A medical and cultural conceptual analysis of the text "Medical-moral report of the very painful, and rigorous disease of epilepsy" is carried out.
Results: The physicians of the Enlightenment managed to define epilepsy, classify its seizures, explain its causes and pathophysiology, as well as carry out a comprehensive approach. This biomedical concept complemented and coincided with theological explanations of epilepsy.
Conclusion: The Enlightenment was fundamental for a systematized development to explain epilepsy, which in some ways persists until today. The influence of the Aztec and Mayan cultures in this text is minimal.
{"title":"\"Penosissima, y rigorosa enfermedad\" (Most Troublesome and rigorous disease): An analysis of the first medical-moral treatise on epilepsy in Latin America.","authors":"Jaime Carrizosa-Moog","doi":"10.1016/j.yebeh.2024.110243","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110243","url":null,"abstract":"<p><strong>Introduction: </strong>The influence of the Enlightenment is evident with the mention of Herman Boerhave. The strong European influence draws attention with minimal expression of the social and medical concepts of pre-Colombian cultures such as the Aztec and Mayan.</p><p><strong>Methods: </strong>A medical and cultural conceptual analysis of the text \"Medical-moral report of the very painful, and rigorous disease of epilepsy\" is carried out.</p><p><strong>Results: </strong>The physicians of the Enlightenment managed to define epilepsy, classify its seizures, explain its causes and pathophysiology, as well as carry out a comprehensive approach. This biomedical concept complemented and coincided with theological explanations of epilepsy.</p><p><strong>Conclusion: </strong>The Enlightenment was fundamental for a systematized development to explain epilepsy, which in some ways persists until today. The influence of the Aztec and Mayan cultures in this text is minimal.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110243"},"PeriodicalIF":2.3,"publicationDate":"2024-12-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142909425","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 : 2024-12-30DOI: 10.1016/j.yebeh.2024.110244
Ismayanti Mohd Ismail, Ching Soong Khoo, Layan Ibrahim, Marjorie Jia Yi Ong, Hui Jan Tan, Rozita Hod, Azlin Baharudin, Muhammad Samir Haziq Abd Rahman
Background: There are still insufficient data on caregiver burden among caregivers of adult people with epilepsy (PWE), particularly in Malaysia. This study aims to explore the level of perceived caregiver burden among the informal caregivers caring for PWE, its predicting factors associated with caregiver burden, and the impact of this caregiver burden on their psychological health.
Methods: In this cross-sectional study, caregivers of adult PWE attending the neurology outpatient clinic at Hospital Canselor Tuanku Muhriz (HCTM) completed a comprehensive questionnaire comprising demographic data of participants and care recipients (adult PWE). Epilepsy-related data were obtained from the interview and medical records. Affiliate stigma among caregivers was assessed using Affiliate Stigma Scale (ASS), and psychological impacts were evaluated using Depression Anxiety Stress Scale 21 (DASS-21). The level of caregiver burden was evaluated with Zarit Burden Interview (ZBI).
Results: A total of 119 caregivers participated in the study, and 35.2 % of them reported mild to moderate burden. The factors most strongly associated with higher caregiver burden were female caregivers, needs for assistance in activities of daily living (ADL), frequent seizures, polypharmacy, and affiliate stigma among caregivers. A statistically significant positive correlation was seen between caregiver burden and psychological impacts of depression (r 0.522, p < 0.001), anxiety (r 0.463, p < 0.001), and stress (r 0.598, p < 0.001).
Conclusion: This study demonstrated various degrees of caregiver burden among caregivers of adult PWE. A better understanding on the predictive factors and impacts on psychological health of caregivers are needed to provide suitable interventions including psychoeducation for the caregivers to alleviate their burden and subsequently improve the quality of caregiving.
{"title":"Prevalence and associated factors of caregiving burden among caregivers of adults with epilepsy in Malaysia - A cross-sectional study.","authors":"Ismayanti Mohd Ismail, Ching Soong Khoo, Layan Ibrahim, Marjorie Jia Yi Ong, Hui Jan Tan, Rozita Hod, Azlin Baharudin, Muhammad Samir Haziq Abd Rahman","doi":"10.1016/j.yebeh.2024.110244","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110244","url":null,"abstract":"<p><strong>Background: </strong>There are still insufficient data on caregiver burden among caregivers of adult people with epilepsy (PWE), particularly in Malaysia. This study aims to explore the level of perceived caregiver burden among the informal caregivers caring for PWE, its predicting factors associated with caregiver burden, and the impact of this caregiver burden on their psychological health.</p><p><strong>Methods: </strong>In this cross-sectional study, caregivers of adult PWE attending the neurology outpatient clinic at Hospital Canselor Tuanku Muhriz (HCTM) completed a comprehensive questionnaire comprising demographic data of participants and care recipients (adult PWE). Epilepsy-related data were obtained from the interview and medical records. Affiliate stigma among caregivers was assessed using Affiliate Stigma Scale (ASS), and psychological impacts were evaluated using Depression Anxiety Stress Scale 21 (DASS-21). The level of caregiver burden was evaluated with Zarit Burden Interview (ZBI).</p><p><strong>Results: </strong>A total of 119 caregivers participated in the study, and 35.2 % of them reported mild to moderate burden. The factors most strongly associated with higher caregiver burden were female caregivers, needs for assistance in activities of daily living (ADL), frequent seizures, polypharmacy, and affiliate stigma among caregivers. A statistically significant positive correlation was seen between caregiver burden and psychological impacts of depression (r 0.522, p < 0.001), anxiety (r 0.463, p < 0.001), and stress (r 0.598, p < 0.001).</p><p><strong>Conclusion: </strong>This study demonstrated various degrees of caregiver burden among caregivers of adult PWE. A better understanding on the predictive factors and impacts on psychological health of caregivers are needed to provide suitable interventions including psychoeducation for the caregivers to alleviate their burden and subsequently improve the quality of caregiving.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110244"},"PeriodicalIF":2.3,"publicationDate":"2024-12-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142909513","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}
Background: The fundamental pathophysiologic understanding of different seizure types in Temporal lobe epilepsy (TLE) remains unclear. This study aimed to assess the distinct alterations of structural network in TLE patients with different seizure types and their relationships with cognitive and psychiatric symptoms.
Methods: Seventy-three patients with unilateral TLE, including 25 with uncontrolled focal to bilateral tonic-clonic seizures (FBTCS), 25 with controlled FBTCS and 23 with focal impaired awareness seizures (FIAS), as well as 26 healthy controls (HC), underwent the diffusion tensor imaging (DTI) scan. Network-based statistic (NBS) and graph theory analyses were employed to investigate the structural network and its topological properties. Partial correlation analyses were conducted to examine the relationships between clinical variables and disrupted network characteristics. Additionally, the support vector machine (SVM) algorithm was utilized for the classification of controlled and uncontrolled FBTCS.
Results: Compared to HC, TLE seizure type subgroups presented differently aberrant SC within the frontostriatal network. Additionally, alterations in the rich club organization and global network metrics were observed only in FBTCS. Notably, a significant decrease in all nodal metrics of the right amygdala were observed within the uncontrolled FBTCS group compared to the other three groups. Additionally, the disrupted nodal properties were significantly correlated with the age of onset, duration of epilepsy and psychiatric symptoms in FBTCS. Furthermore, the classifier achieved notably high accuracy (98%) in distinguishing between controlled and uncontrolled FBTCS.
Conclusions: Our findings may contribute to elucidating the neuropathological mechanisms of different seizure types in TLE and their impacts on cognitive and psychiatric status. SVM algorithm combined with nodal properties holds promise for predicting the poor seizure control of FBTCS.
{"title":"Differential alterations of structural network in temporal lobe epilepsy with different seizure types are associated with cognitive and psychiatric status.","authors":"Xuemei Chen, Xiao Zhang, Bailing Qin, Dongying Huang, Cuimi Luo, Huachun Huang, Qin Zhou, Zirong Chen, Jinou Zheng","doi":"10.1016/j.yebeh.2024.110228","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110228","url":null,"abstract":"<p><strong>Background: </strong>The fundamental pathophysiologic understanding of different seizure types in Temporal lobe epilepsy (TLE) remains unclear. This study aimed to assess the distinct alterations of structural network in TLE patients with different seizure types and their relationships with cognitive and psychiatric symptoms.</p><p><strong>Methods: </strong>Seventy-three patients with unilateral TLE, including 25 with uncontrolled focal to bilateral tonic-clonic seizures (FBTCS), 25 with controlled FBTCS and 23 with focal impaired awareness seizures (FIAS), as well as 26 healthy controls (HC), underwent the diffusion tensor imaging (DTI) scan. Network-based statistic (NBS) and graph theory analyses were employed to investigate the structural network and its topological properties. Partial correlation analyses were conducted to examine the relationships between clinical variables and disrupted network characteristics. Additionally, the support vector machine (SVM) algorithm was utilized for the classification of controlled and uncontrolled FBTCS.</p><p><strong>Results: </strong>Compared to HC, TLE seizure type subgroups presented differently aberrant SC within the frontostriatal network. Additionally, alterations in the rich club organization and global network metrics were observed only in FBTCS. Notably, a significant decrease in all nodal metrics of the right amygdala were observed within the uncontrolled FBTCS group compared to the other three groups. Additionally, the disrupted nodal properties were significantly correlated with the age of onset, duration of epilepsy and psychiatric symptoms in FBTCS. Furthermore, the classifier achieved notably high accuracy (98%) in distinguishing between controlled and uncontrolled FBTCS.</p><p><strong>Conclusions: </strong>Our findings may contribute to elucidating the neuropathological mechanisms of different seizure types in TLE and their impacts on cognitive and psychiatric status. SVM algorithm combined with nodal properties holds promise for predicting the poor seizure control of FBTCS.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110228"},"PeriodicalIF":2.3,"publicationDate":"2024-12-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142892499","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 : 2024-12-24DOI: 10.1016/j.yebeh.2024.110229
Sai Sirisha, Sireesha Jala, Sudhindra Vooturi, Anuja Patil, Shanmukhi Somayajula, Sita Jayalakshmi
Objective: The current study evaluated the association between behavioral problems in children and adolescents with epilepsy and parental stress.
Methods: A prospective observational study of 314 consecutive parents of children and adolescents with epilepsy who attended the out-patient epilepsy clinic of a tertiary care hospital was done between June 2022 and September 2023. Self-reported Child Behaviour Check List (CBCL) was reported by parents; who also reported the parental stress scale (PSS). The data as per CBCL guidelines was evaluated in three groups of children and adolescents with epilepsy aged 1.5 to 5 years; 6 to 10 years and 11 to 18 years. The associations between score on CBCL with reported score on PSS was evaluated.
Results: Among the 314 children and adolescents with epilepsy, 37(11.8 %) were aged between 1.5 to 5 years; while 108(34.4 %) aged between six to 10 years, the remaining 169(53.8 %) aged between 11 to 18 years. In children below 5 years of age, internalizing factors like anxiety/depression, somatic symptoms were significantly higher. Importantly, the reported scores on PSS were lower in parents of adolescents than children with epilepsy. When evaluated for correlation of CBCL with PSS, internalizing characteristics like withdrawal were strongly associated with parental stress in children below the age of 5 years. On the contrary, in children aged above five years, and in adolescents externalizing characteristics showed strong correlations with parental stress. Child's higher school performance had a negative correlation with PSS(R-Square: -0.499; p < 0.001) and requirement for special school or child not attending school had positive correlation with PSS(R-square: 0.433;p < 0.001).
Conclusion: Behavioral problems in children and adolescents with epilepsy differ with age. Parental stress is associated with internalizing behavior in pre-school children whereas externalizing behavior dominated in children and adolescents. Poor performance of children at school and requirement for special school is associated with high parental stress.
{"title":"Association between behavioral problems and parental stress in children and adolescents with epilepsy.","authors":"Sai Sirisha, Sireesha Jala, Sudhindra Vooturi, Anuja Patil, Shanmukhi Somayajula, Sita Jayalakshmi","doi":"10.1016/j.yebeh.2024.110229","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110229","url":null,"abstract":"<p><strong>Objective: </strong>The current study evaluated the association between behavioral problems in children and adolescents with epilepsy and parental stress.</p><p><strong>Methods: </strong>A prospective observational study of 314 consecutive parents of children and adolescents with epilepsy who attended the out-patient epilepsy clinic of a tertiary care hospital was done between June 2022 and September 2023. Self-reported Child Behaviour Check List (CBCL) was reported by parents; who also reported the parental stress scale (PSS). The data as per CBCL guidelines was evaluated in three groups of children and adolescents with epilepsy aged 1.5 to 5 years; 6 to 10 years and 11 to 18 years. The associations between score on CBCL with reported score on PSS was evaluated.</p><p><strong>Results: </strong>Among the 314 children and adolescents with epilepsy, 37(11.8 %) were aged between 1.5 to 5 years; while 108(34.4 %) aged between six to 10 years, the remaining 169(53.8 %) aged between 11 to 18 years. In children below 5 years of age, internalizing factors like anxiety/depression, somatic symptoms were significantly higher. Importantly, the reported scores on PSS were lower in parents of adolescents than children with epilepsy. When evaluated for correlation of CBCL with PSS, internalizing characteristics like withdrawal were strongly associated with parental stress in children below the age of 5 years. On the contrary, in children aged above five years, and in adolescents externalizing characteristics showed strong correlations with parental stress. Child's higher school performance had a negative correlation with PSS(R-Square: -0.499; p < 0.001) and requirement for special school or child not attending school had positive correlation with PSS(R-square: 0.433;p < 0.001).</p><p><strong>Conclusion: </strong>Behavioral problems in children and adolescents with epilepsy differ with age. Parental stress is associated with internalizing behavior in pre-school children whereas externalizing behavior dominated in children and adolescents. Poor performance of children at school and requirement for special school is associated with high parental stress.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110229"},"PeriodicalIF":2.3,"publicationDate":"2024-12-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142893147","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 : 2024-12-21DOI: 10.1016/j.yebeh.2024.110174
Ida Stenshorne, Marte Roa Syvertsen, Anette Ramm-Pettersen, Kaja K Selmer, Jeanette Koht, Mari Wold Henriksen
<p><strong>Background: </strong>Developmental and epileptic encephalopathies (DEEs) are a group of severe and heterogeneous epilepsies. Most of the affected patients have treatment refractory seizures, intellectual disability (ID), and multiple comorbidities. The condition has a negative impact on quality of life, both for the patients and their families. In recent decades, genetic testing has become an important part of the diagnostic routine investigation of patients with DEE. However, there are few quantitative studies on parental experiences and their perspectives on the genetic testing of their children. The aim of the present study was to describe parental experiences and perspectives concerning genetic testing, to investigate the importance of receiving an etiologic diagnosis, and consider the emotional impact of test results on parents.</p><p><strong>Methods: </strong>Based on a systematic literature search, a semi-quantitative questionnaire was designed to investigate the experiences of caregivers of patients with DEE, focusing on the period of genetic investigation. Eligible participants were caregivers of patients with epilepsy and intellectual disability or psychomotor delay (DEE) who had been through genetic investigation. Participants were consecutively recruited at Drammen Hospital (Norway) and through online recruitment in 2022-2023. The study was explorative and descriptive, and statistical analyses were performed with STATA.</p><p><strong>Results: </strong>Among the 60 responding caregivers, 59 were biological parents (32-75 years old) of children with DEE (1-43 years old) and were included in the statistical analyses. Among them, 67 % had a child with a genetic diagnosis. Knowing the etiology of the child's DEE was important for 91 %. Prior to genetic diagnostics, 62 % thought that knowing the cause of disease would make it easier to handle the epilepsy and other medical challenges. A large proportion (71 %) reported having had concerns about the cause of their child's disease before a potential genetic diagnosis was established, and, among these, 67 % suspected that something had happened during pregnancy or birth. The result of the genetic test led to a significantly higher degree of self-reported relief, grief, sadness, loneliness, and despair for the parents of a child that received a specific genetic diagnosis, compared to those who did not receive a diagnosis. While 24 % of parents had felt guilt concerning their child's epileptic condition (at any time), only 8,6% reported feeling guilt when receiving the result of the genetic test.</p><p><strong>Conclusions: </strong>This study provides insight into the parental experiences of genetic testing in children with DEE. It is important for the parents of a child with DEE to know the cause of disease. Parents of children with DEE who received a genetic diagnosis experienced relief, but also negative feelings associated with receiving the result of the genetic test. Support and
{"title":"Impact of genetic testing in developmental and epileptic encephalopathy- parents' perspective.","authors":"Ida Stenshorne, Marte Roa Syvertsen, Anette Ramm-Pettersen, Kaja K Selmer, Jeanette Koht, Mari Wold Henriksen","doi":"10.1016/j.yebeh.2024.110174","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110174","url":null,"abstract":"<p><strong>Background: </strong>Developmental and epileptic encephalopathies (DEEs) are a group of severe and heterogeneous epilepsies. Most of the affected patients have treatment refractory seizures, intellectual disability (ID), and multiple comorbidities. The condition has a negative impact on quality of life, both for the patients and their families. In recent decades, genetic testing has become an important part of the diagnostic routine investigation of patients with DEE. However, there are few quantitative studies on parental experiences and their perspectives on the genetic testing of their children. The aim of the present study was to describe parental experiences and perspectives concerning genetic testing, to investigate the importance of receiving an etiologic diagnosis, and consider the emotional impact of test results on parents.</p><p><strong>Methods: </strong>Based on a systematic literature search, a semi-quantitative questionnaire was designed to investigate the experiences of caregivers of patients with DEE, focusing on the period of genetic investigation. Eligible participants were caregivers of patients with epilepsy and intellectual disability or psychomotor delay (DEE) who had been through genetic investigation. Participants were consecutively recruited at Drammen Hospital (Norway) and through online recruitment in 2022-2023. The study was explorative and descriptive, and statistical analyses were performed with STATA.</p><p><strong>Results: </strong>Among the 60 responding caregivers, 59 were biological parents (32-75 years old) of children with DEE (1-43 years old) and were included in the statistical analyses. Among them, 67 % had a child with a genetic diagnosis. Knowing the etiology of the child's DEE was important for 91 %. Prior to genetic diagnostics, 62 % thought that knowing the cause of disease would make it easier to handle the epilepsy and other medical challenges. A large proportion (71 %) reported having had concerns about the cause of their child's disease before a potential genetic diagnosis was established, and, among these, 67 % suspected that something had happened during pregnancy or birth. The result of the genetic test led to a significantly higher degree of self-reported relief, grief, sadness, loneliness, and despair for the parents of a child that received a specific genetic diagnosis, compared to those who did not receive a diagnosis. While 24 % of parents had felt guilt concerning their child's epileptic condition (at any time), only 8,6% reported feeling guilt when receiving the result of the genetic test.</p><p><strong>Conclusions: </strong>This study provides insight into the parental experiences of genetic testing in children with DEE. It is important for the parents of a child with DEE to know the cause of disease. Parents of children with DEE who received a genetic diagnosis experienced relief, but also negative feelings associated with receiving the result of the genetic test. Support and","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110174"},"PeriodicalIF":2.3,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142876559","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 : 2024-12-20DOI: 10.1016/j.yebeh.2024.110224
Yasemin Şahin Yıldız, Büşra Kurtuluş
Objective: This study aimed to evaluate the effect of a peer education program on students' epilepsy knowledge, attitudes, and seizure first aid approaches.
Methods: This study utilized a one-group pretest/posttest quasi-experimental design. Peer educators provided training to 1343 peer students. The program consisted of two face-to-face sessions, each lasting 60 min. Data were collected using a demographic questionnaire, first aid management information form, The Epilepsy Knowledge Level Scale, and The Epilepsy Attitude Scale. Descriptive statistics, paired samples t-test, and Pearson correlation analysis were used to analyze the data. The significance level was set at p < 0.05.
Results: The Epilepsy Knowledge Scale score increased from 8.17(±3.46) to 12.50(±2.41), and The Epilepsy Attitude Scale score increased from 59.39(±7.32) to 61.01(±6.95) after the training. There was a significant positive correlation between students' knowledge and attitudes both before training (r = 0.305, p < 0.05) and after training (r = 0.344, p < 0.05). After the training, the percentage of students who felt competent for seizure first aid intervention increased from 20.5 % to 54.4 % (p < 0.001). After the training, the results regarding recognizing seizure symptoms and what to do during a seizure were statistically significant (p < 0.05).
Significance: Our results show that peer-mediated learning is highly acceptable and that the training improves students' knowledge, positive attitudes, and seizure first aid approaches. Given these results, it is suggested that school-based epilepsy peer education programs be developed and implemented for students who will become future health professionals.
{"title":"The impact of an epilepsy peer education program on knowledge, attitudes, and first aid approaches: A quasi-experimental design.","authors":"Yasemin Şahin Yıldız, Büşra Kurtuluş","doi":"10.1016/j.yebeh.2024.110224","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110224","url":null,"abstract":"<p><strong>Objective: </strong>This study aimed to evaluate the effect of a peer education program on students' epilepsy knowledge, attitudes, and seizure first aid approaches.</p><p><strong>Methods: </strong>This study utilized a one-group pretest/posttest quasi-experimental design. Peer educators provided training to 1343 peer students. The program consisted of two face-to-face sessions, each lasting 60 min. Data were collected using a demographic questionnaire, first aid management information form, The Epilepsy Knowledge Level Scale, and The Epilepsy Attitude Scale. Descriptive statistics, paired samples t-test, and Pearson correlation analysis were used to analyze the data. The significance level was set at p < 0.05.</p><p><strong>Results: </strong>The Epilepsy Knowledge Scale score increased from 8.17(±3.46) to 12.50(±2.41), and The Epilepsy Attitude Scale score increased from 59.39(±7.32) to 61.01(±6.95) after the training. There was a significant positive correlation between students' knowledge and attitudes both before training (r = 0.305, p < 0.05) and after training (r = 0.344, p < 0.05). After the training, the percentage of students who felt competent for seizure first aid intervention increased from 20.5 % to 54.4 % (p < 0.001). After the training, the results regarding recognizing seizure symptoms and what to do during a seizure were statistically significant (p < 0.05).</p><p><strong>Significance: </strong>Our results show that peer-mediated learning is highly acceptable and that the training improves students' knowledge, positive attitudes, and seizure first aid approaches. Given these results, it is suggested that school-based epilepsy peer education programs be developed and implemented for students who will become future health professionals.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110224"},"PeriodicalIF":2.3,"publicationDate":"2024-12-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142871687","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}