Rehab Magdy, Nirmeen A Kishk, Mennat-Allah Tarek, Manal Moussa, Marwa M Zein, Mohamed Khodery, Salsabil Abo Al-Azayem
{"title":"Postpartum depression and mother-infant bonding in women with epilepsy: A case-control study.","authors":"Rehab Magdy, Nirmeen A Kishk, Mennat-Allah Tarek, Manal Moussa, Marwa M Zein, Mohamed Khodery, Salsabil Abo Al-Azayem","doi":"10.1016/j.yebeh.2024.110213","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110213","url":null,"abstract":"<p><strong>Background & objectives: </strong>Postpartum depression is a debilitating mental health condition that consequently can negatively impact the mother/infant unit. This study aimed to screen for postpartum depression among women with epilepsy (WWE) versus healthy women and its consequences on establishing a proper mother-infant bonding.</p><p><strong>Methods: </strong>A group of WWE (n = 102) and a control group of healthy women (n = 119) were evaluated 4-6 weeks postpartum. The Edinburgh Postnatal Depression Scale (EPDS) and the Postpartum Bonding Questionnaire (PBQ) were used.</p><p><strong>Results: </strong>The median scores of EPDS did not significantly differ between WWE and the control group (P = 0.077). The median scores of infant-focused anxiety of PBQ were significantly lower in WWE than in the control group, while the median scores of risk of abuse were significantly higher in the former than in the latter group. Scores of EPDS and PBQ didn't significantly differ between groups of different seizure types, etiologies, and ASMs regimens. However, the EPDS scores were significantly higher in WWE, who experienced seizure exacerbation, than in others (P = 0.049). Also, EPDS scores were significantly correlated with PBQ scores. By linear regression analysis, the only independent predictor of EPDS score was seizure exacerbation during pregnancy.</p><p><strong>Conclusion: </strong>The current postpartum screening report revealed that WWE are not at an increased risk of postpartum depression than healthy women. However, WWE who experience seizure exacerbations during their pregnancy need to be cautiously screened for postpartum depression, which may negatively impact mother-infant bonding. Strenuous efforts should be made to improve the mental health services for those women.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110213"},"PeriodicalIF":2.3,"publicationDate":"2024-12-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142817389","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}
{"title":"Double Stigma: Reluctance to be referred to a psychiatrist among people with epilepsy and psychiatric comorbidities.","authors":"Si-Lei Fong, Aminath Shauna, Kheng-Seang Lim, Chong-Guan Ng, Xuen Yu, Siew-Tim Lai, Hui-Jan Tan, Juen-Kiem Tan, Venus Tang, Chong-Tin Tan","doi":"10.1016/j.yebeh.2024.110196","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110196","url":null,"abstract":"<p><strong>Introduction: </strong>Psychiatric comorbidities such as depression and anxiety disorders are highly prevalent among people with epilepsy (PWE). These two co-occurring chronic illnesses could lead to double stigma and negatively impact every aspect of psychiatric and epilepsy care for PWE, especially in help-seeking behavior. We aimed to identify the socio-demographic and clinical factors contributing to reluctance to be referred to a psychiatrist among PWE.</p><p><strong>Methods: </strong>A prospective cross-sectional study was conducted at a tertiary teaching hospital in Kuala Lumpur, Malaysia. Psychological screening was done using the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E) and General Anxiety Disorder (GAD-7) questionnaire. Patients screened positive were offered psychiatric referrals and given an early psychiatric clinic appointment if they agreed to the referral. The reasons for those who refused the referral were noted.</p><p><strong>Results: </strong>Out of 585 patients, 91 (15.5 %) were screened positive for depression and/or anxiety. Eighteen patients were excluded from the study due to pre-existing psychiatric disorders. Of the remaining 73 patients, 23 (31.5 %) agreed to be referred to a psychiatrist. Only 17 (23.3 %) attended the psychiatrist appointment. A total of 11 (15.1 %) and one (1.4 %) patients were subsequently diagnosed with major depressive disorder and generalized anxiety disorder, respectively. Another 50 (68.5 %) patients were not referred to a psychiatrist, predominantly (n = 43, 58.9 %) due to reluctance to be referred to a psychiatrist. The reasons included avoidance of referral likely related to stigma (n = 22, 51.2 %), self-reliance, family and caregivers' disapproval of referral, and logistic difficulty. The mean scores in NDDI-E and GAD-7 in the referred group were higher than the not-referred group but not statistically significant (NDDI-E: 17.8 ± 3.6 vs. 16.5 ± 2.5, p = 0.072; GAD-7: 12.4 ± 5.70 vs. 9.8 ± 5.4, p = 0.061).</p><p><strong>Conclusion: </strong>A significant number of PWE were reluctant to receive psychiatric referrals predominantly due to self-avoidance or family and caregiver disapproval of referral likely related to stigma. An integrated epilepsy care management model is recommended.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110196"},"PeriodicalIF":2.3,"publicationDate":"2024-12-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142812534","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}
{"title":"The comparison of hand grip strength between healthy volunteers and individuals diagnosed with temporal lobe epilepsy.","authors":"Ece Hilal, Fatma Meltem Usteki, Serkan Aksu, Semai Bek, Gulnihal Kutlu","doi":"10.1016/j.yebeh.2024.110201","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110201","url":null,"abstract":"<p><strong>Purpose: </strong>Hand grip strength (HGS) is crucial for the performance of daily activities and has been linked to various clinical parameters, including morbidity, mortality, and both physical and cognitive functions. While HGS has been shown to decline in numerous diseases, it has not been previously examined in patients diagnosed with temporal lobe epilepsy. This study aims to investigate the differences in hand grip strength between individuals with temporal lobe epilepsy and healthy volunteers.</p><p><strong>Methods: </strong>A total of forty-four patients diagnosed with temporal lobe epilepsy (22 with controlled epilepsy and 22 with drug-resistant epilepsy) and 22 healthy volunteers were followed up at the Epilepsy and Sleep Center. Maximum and mean hand grip strength measurements were obtained for both the dominant and non-dominant hands using a digital hand dynamometer. Based on the assumption of normality, data from healthy volunteers and all epilepsy patients were analyzed using independent samples t-tests or Mann-Whitney U tests. Comparisons among the resistant epilepsy group, controlled epilepsy group, and healthy volunteer group were conducted using one-way analysis of variance (ANOVA) or Kruskal-Wallis tests. Pairwise comparisons were performed using independent samples t-tests or Mann-Whitney U tests. Correlations were assessed using Spearman's rank correlation tests.</p><p><strong>Results: </strong>The mean age of the sample was 32.56 years (SD = ±1.29). The sample comprised 24 male and 42 female participants. The average duration of education was 11.68 ± 3.20 years, while the average age of onset of epilepsy among patients was 16.39 ± 10.95 years, with a disease duration of 16.45 ± 10.97 years. Significant differences were observed in all hand grip strength variables between healthy volunteers and individuals diagnosed with temporal lobe epilepsy. Notably, there were significant differences in hand grip strength between healthy volunteers and the patient group; however, no differences were found between subgroups with controlled seizures and those with drug-resistant epilepsy.</p><p><strong>Conclusion: </strong>A significant reduction in hand grip strength has been observed in patients diagnosed with temporal lobe epilepsy, regardless of treatment resistance and disease severity. This decline may be attributed to several factors, including impaired motor coordination resulting from seizures, side effects of medications, and mood disturbances. Further comprehensive studies are necessary to explore the relationship between these underlying factors and hand grip strength, as well as its association with other clinical variables such as functionality and mortality.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110201"},"PeriodicalIF":2.3,"publicationDate":"2024-12-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142812546","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}
Marta Conti, Sara Matricardi, Ludovica M Piscitello, Marina Auconi, Ida Cursio, Alessandra Terracciano, Federico Vigevano, Nicola Specchio, Carla Marini, Lucia Fusco
{"title":"Infantile epileptic spasms syndrome: When spasms come out of the blue.","authors":"Marta Conti, Sara Matricardi, Ludovica M Piscitello, Marina Auconi, Ida Cursio, Alessandra Terracciano, Federico Vigevano, Nicola Specchio, Carla Marini, Lucia Fusco","doi":"10.1016/j.yebeh.2024.110180","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110180","url":null,"abstract":"<p><strong>Background: </strong>This study evaluates the electroclinical features of infantile epileptic spasms syndrome (IESS) suddenly appearing in previously normal patients, aiming to describe clinical outcomes and independent predictors.</p><p><strong>Method: </strong>We retrospectively selected a homogeneous group of patients with IESS from two Italian centers. All patients had normal development prior to IESS onset and a follow-up period lasting at least one year. Patients with clinically relevant risk factors, other seizure types, brain structural abnormalities or known genetic diseases were excluded. The BASED score was used to standardize interictal EEG patterns.</p><p><strong>Results: </strong>Forty-three patients were enrolled, with a median age at IESS onset of 6 months; median follow-up was 43 months. At onset, 65.11 % exhibited mild behavioral changes, including irritability and poor social smile. At firstEEG, epileptic encephalopathy (EE) was prevalent during wakefulness (69.76 %; median BASED score 4) and sleep (81.40 %; median BASED score 5). Within 15 days of treatment, 83.72 % achieved seizure freedom, primarily with ACTH depot (90.70 %). After six months, all patients were seizure- and EE-free. At the last follow-up, 81.40 % had normal cognitive functioning; in the remaining, specific neurodevelopmental disorders, predominantly involving language were reported. No statistically significant differences were found in the electroclinical presentation and neuropsychological outcome.</p><p><strong>Conclusion: </strong>We describe a subgroup of IESS patients with prompt response to treatment, long-term seizure freedom, and absence of severe neurodevelopmental impact. Our data suggest that within the IESS spectrum, there is a distinctive subgroup with global favorable outcome. Key clinical features predictors of good outcome could include normal development prior to IESS and early response to treatment.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110180"},"PeriodicalIF":2.3,"publicationDate":"2024-12-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142812540","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}
{"title":"Psychometric properties of the Malay and Chinese Epilepsy Self-Stigma Scale (ESSS).","authors":"Woon-Hin Ching, Ming-Yi Soon, Joe-Lynn Yee, Zhi-Jien Chia, Kheng-Seang Lim, Si-Lei Fong, Xuen Yu, Zhi-Qian Ong, Izumi Kuramochi","doi":"10.1016/j.yebeh.2024.110176","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110176","url":null,"abstract":"<p><strong>Objective: </strong>Self-stigma means internalizing negative beliefs and attitudes associated with stigmatized identity. This study aimed to translate and validate the Malay and Chinese versions of the Epilepsy Self-Stigma Scale (ESSS).</p><p><strong>Methods: </strong>The Epilepsy Self-Stigma Scale was translated into the Malay (ESSS-M) and Chinese versions (ESSS-C) according to standard principles and were tested in 100 Malay and 100 Chinese-speaking people with epilepsy (PWE) respectively. Psychometric evaluations were done based on equal item variance, convergent and discriminant validity, construct validity and reliability. Correlation analyses were carried out between the ESSS and the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E) and Generalized Anxiety Disorder-7 (GAD-7).</p><p><strong>Results: </strong>For the ESSS-M, 100 Malay-speaking PWE with a mean age of 42.25 years (±15.18) were recruited. Exploratory factor analysis identified eight items loaded on three factors: \"Internalization of stigma\", \"Societal incomprehension\", and \"Confidentiality\". However, item 1 was loaded under a different component from the initial paper, conceptualized as confidentiality. For the ESSS-C, 100 Chinese-speaking participants with a mean age of 41.07 years (±15.57). Exploratory factor analysis identified three loading factors similar to the original scale: \"Internalization of stigma\", \"Societal incomprehension\", and \"Confidentiality\". Both ESSS-M and ESSS-C scales showed significant correlations with NDDI-E and GAD-7 scores, showcasing substantial construct validity. The Cronbach's alpha values were α = 0.822 for the ESSS-M and α = 0.831 for the ESSS-C.</p><p><strong>Conclusion: </strong>Both the ESSS-M and ESSS-C were reliable and valid for measuring epilepsy self-stigma among the Malay- and Chinese-speaking PWE in Malaysia.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110176"},"PeriodicalIF":2.3,"publicationDate":"2024-12-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142812543","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}
Giovanna Scorrano, Caroline Delattre, Anne Emmanuel Leiber, Rima Nabbout
{"title":"Evaluating the patient needs and tolerability of Clobazam liquid formulation (Likozam® 1 mg/mL): A French patient and care-givers' centered survey.","authors":"Giovanna Scorrano, Caroline Delattre, Anne Emmanuel Leiber, Rima Nabbout","doi":"10.1016/j.yebeh.2024.110183","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110183","url":null,"abstract":"<p><strong>Background: </strong>Clobazam (CLB) is a 1,5-benzodiazepine, currently used as add-on anti-seizure medication in complex and drug-resistant epilepsies. In France, CLB is available in three galenic forms and in a masterful one. The aim of this survey is to assess the experience of patients and families on CLB galenic forms focusing on CLB liquid formulation, Likozam® 1 mg/ml exclusively available in hospitals' pharmacies.</p><p><strong>Methods: </strong>We performed a survey on the use of benzodiazepines with the Dravet syndrome Alliance (ASD) France. The survey was distributed on their site (http://www.dravet.fr/) and addressed to caregivers of patients who received CLB in any galenic form. The survey was co-developed by ASD and the Reference Centre for Rare Epilepsies, Necker. It included both open and closed questions. We used a 5-point Likert scale to assess the caregiver opinion on every formulation received, addressing medication palatability, dose adaptability, ability to take the drug without help, easiness of swallowing and access to treatment. Finally, we had some additional questions for the CLB liquid form.</p><p><strong>Results: </strong>Eighty-seven patients aged 2 to 41 years (mean age 13, standard deviation ± 6.6) participated in this study. They presented Dravet syndrome (DS) (71/87, 82 %), Lennox-Gastaut syndrome (LGS) (4/87, 4 %), infantile epileptic spasms syndrome (IESS) (1/87, 1 %), and epilepsy with myoclonic atonic seizures (EMAtS) (1/87, 1 %). The epilepsy syndrome was unknown for 10/87 (12 %). The mean age at the first CLB prescription was 9 years (standard deviation ± 5.9, range age 1-35 years). Most patients (69/87, 79.3 %) had polytherapy. CLB most frequent formulations were the liquid (Likozam® 1 mg/mL) (44/87, 50.5 %) and the pill formulation (Urbanyl® 5 mg) (43/87, 49.4 %). The liquid formulation was selected as the most appropriate by 49,4% of caregivers, due to the greater easiness of administration and the dose adaptability. The easiness of access to treatment was the major issue against this formulation as it is currently available only in hospitals' pharmacies.</p><p><strong>Conclusion: </strong>Our study revealed an unmet need of CLB liquid form mainly in infants and young children, where easy to swallow and adaptable small doses are required during CLB introduction or discontinuation. However, some impactful issues such as access to treatment, palatability or liquid quantity administered should be optimized to improve patient and families' acceptability of liquid CLB.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110183"},"PeriodicalIF":2.3,"publicationDate":"2024-12-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142812537","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}
{"title":"Impact of problem-based learning on stigma toward epilepsy among medical students: An intervention verification study.","authors":"Yuto Arai, Tohru Okanishi, Yuko Nakamura, Kento Ohta, Masaru Ueki, Izumi Kuramochi, Yoshihiro Maegaki","doi":"10.1016/j.yebeh.2024.110200","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110200","url":null,"abstract":"<p><strong>Introduction: </strong>Stigma toward epilepsy is widespread not only among the general population but also among healthcare professionals. Therefore, the necessity of providing educational opportunities for epilepsy from an early stage in student education has been emphasized. Recently, problem-based learning (PBL) has gained importance in higher education, with reports indicating that it not only enhances knowledge but also reduces stigma.</p><p><strong>Objective: </strong>This study aimed to evaluate the effects of an epilepsy-related problem-based learning (E-PBL) program on medical students' stigma toward epilepsy. Additionally, we assessed whether the E-PBL program improved medical students' knowledge of epilepsy.</p><p><strong>Materials and methods: </strong>Participants were fourth-year medical students. The E-PBL program was conducted over 5 days, from July 3, 2023 to July 7, 2023. The outcomes included the Japanese version of the Public Attitudes Toward Epilepsy (PATE-J) scale, which was used to assess stigma toward epilepsy before and after the E-PBL program. We also administered a short, structured questionnaire to assess participants' knowledge of epilepsy.</p><p><strong>Results: </strong>In total, 112 students were examined. The total PATE-J score was significantly lower after E-PBL (median: 18; interquartile range [IQR]: 14-20) than before PBL (median: 19; IQR: 16-23) (p = 0.013). Additionally, the number of correct responses to the short, structured questionnaire after the E-PBL program was significantly higher than before the program (p < 0.001).</p><p><strong>Conclusions: </strong>E-PBL programs have the potential to decrease stigma toward epilepsy while enhancing knowledge about epilepsy among medical students. E-PBL represents a novel educational approach for medical students in the context of epilepsy education.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110200"},"PeriodicalIF":2.3,"publicationDate":"2024-12-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142806710","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}
Deniz Menderes, Esra Serdaroğlu, Tuğba Hırfanoğlu, Ayşe Serdaroğlu, Ebru Arhan
{"title":"What is the impact of etiology, lead time to treatment, and parental awareness on outcomes in infantile epileptic spasm syndrome?","authors":"Deniz Menderes, Esra Serdaroğlu, Tuğba Hırfanoğlu, Ayşe Serdaroğlu, Ebru Arhan","doi":"10.1016/j.yebeh.2024.110178","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110178","url":null,"abstract":"<p><strong>Objective: </strong>Infantile epileptic spasm syndrome (IESS) is a kind of developmental epileptic encephalopathy that can lead to severe outcomes, including drug-resistant epilepsy and impaired neurodevelopment. The underlying etiology, early diagnosis, and adequate treatment impact the outcome. Our study focused on examining the factors that influence the prognosis and the level of knowledge among families regarding IESS.</p><p><strong>Methods: </strong>In the Department of Pediatric Neurology at Gazi University Hospital, we examined 62 IESS children's demographics, neuroimaging, metabolic and genetic findings, seizure characteristics, treatment choices, and long-term outcomes. Our study examined family awareness of seizures, lead time to treatment(LTT), and their impact on prognosis.</p><p><strong>Results: </strong>Forty-two (67.8 %) patients presented with a symptomatic cause, with over half experiencing intraventricular hemorrhage and/or periventricular leukomalacia attributable to prematurity. The hormonal therapy (tetracosactide or oral prednisolone) was the preferred treatment. Treatment was effective for two-thirds of the patients. Nevertheless, hardly 50 % of the families acknowledged the \"event\" as a seizure. However, 34 (61 %) individuals had sought medical advice from a doctor during the first seven days. The mean time from the start of seizures to seeking medical care was 9.2 ± 5.7 days.</p><p><strong>Conclusion: </strong>Our research revealed that the etiology was the most significant factor influencing the long-term outcomes of IESS. Additionally, we demonstrated that the clinicians who initially encountered the patients promptly referred them to pediatric neurology departments, despite the fact that the families' seizure awareness was poor. To help prevent this circumstance, it is important to provide information about infantile spasms to the families of high-risk infants.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110178"},"PeriodicalIF":2.3,"publicationDate":"2024-12-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142791297","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}
Kayela Arrotta, Brittany Lapin, Margaret Miller, Thomas Hogan, William B Barr, Daniel Friedman, Erica Cotton, Stephan Schuele, Samuel Wiebe, Lara Jehi, Robyn M Busch
{"title":"External validation of the Memory Assessment Clinics Scale for Epilepsy (MAC-E).","authors":"Kayela Arrotta, Brittany Lapin, Margaret Miller, Thomas Hogan, William B Barr, Daniel Friedman, Erica Cotton, Stephan Schuele, Samuel Wiebe, Lara Jehi, Robyn M Busch","doi":"10.1016/j.yebeh.2024.110168","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110168","url":null,"abstract":"<p><strong>Objective: </strong>This study aimed to externally validate the Memory Assessment Clinics Scale for Epilepsy (MAC-E), a brief self-report measure of subjective memory complaints in adults with epilepsy.</p><p><strong>Methods: </strong>A cross-sectional study was conducted including adults with focal pharmacoresistant epilepsy from three Level 4 epilepsy centers in the U.S., who completed the MAC-E as part of a clinical neuropsychological evaluation. Confirmatory factor analysis was conducted, and goodness-of-fit criteria were calculated to assess model fit: comparative fit index (CFI), root mean square error of approximation (RMSEA), and standardized root mean residual (SRMR). Item response theory models were constructed, and Mokken analysis was used to assess discrimination and unidimensionality. Internal consistency was evaluated with McDonald's Omega.</p><p><strong>Results: </strong>There were 191 patients included in the study (mean age = 41 ± 14, 51 % female, 87 % white race). Confirmatory factor analysis supported the 5-factor structure of the MAC-E identified in prior research (CFI = 0.989, RMSEA = 0.056, SRMR = 0.069) with high standardized loadings and R<sup>2</sup> values for each of the 5 factors (0.58-0.91 and 0.34-0.82, respectively). MAC-E items demonstrated high levels of discrimination as well as the ability to evaluate across the entirety of each latent trait. Score responses were uniformly distributed across latent traits, and unidimensionality was established by factor (all H coefficients > 0.4). Internal consistency was high across factors (omega range: 0.77-0.88).</p><p><strong>Conclusions: </strong>Results of this study demonstrate good external validation of the MAC-E in an independent, multicenter cohort of adults with epilepsy. These findings provide further support that the MAC-E is a psychometrically valid, self-report instrument to assess every-day memory abilities in adults with epilepsy in both clinical and research settings.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110168"},"PeriodicalIF":2.3,"publicationDate":"2024-12-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142791311","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}
James Dolbow, Matt Deaton, Marshall Kirsch, Jeanne Lackamp, Jonathan Zande
{"title":"Reconsidering the ethics of provocation techniques for Psychogenic Non-Epileptic Attacks and proposed ethical guidelines for use.","authors":"James Dolbow, Matt Deaton, Marshall Kirsch, Jeanne Lackamp, Jonathan Zande","doi":"10.1016/j.yebeh.2024.110184","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110184","url":null,"abstract":"<p><p>Patients with psychogenic non-epileptic attacks (PNEA) are subject to considerable direct and indirect comorbid psycho-socio-economic impact from their condition. Fortunately, diagnosis and treatment of PNEA has shown to be both medically effective and cost-efficient, ultimately improving PNEA symptoms, mental health, quality of life, and healthcare resource utilization. Though provocation techniques for PNEA have proven highly effective in diagnosing and providing expedited treatment to these patients, they have recently begun to fall out of favor due to ethical concerns about their use. Today, over one-fourth of epilepsy monitoring units do not utilize PNEA provocation techniques in those suspected of the condition. Of the monitoring units that do, less than 10% have an established protocol, and only 20% reported patient consent. The ethics and implications of the methods of diagnosing PNEA have been debated for decades. Specifically, the ethicality of attempting to provoke PNEA episodes using the proven effective methods of suggestion, nocebo, and other techniques have often left clinicians and medical ethicists offering opposing views. Here we review the personal and societal costs of PNEA, the efficacy of these provocation techniques, and the ethical considerations regarding their use, with specific emphasis on the importance of how these techniques are described to patients, as to both ensure informed consent and removed deception. Additionally, addressing these concerns, we propose ethical guidelines for the use of provocation techniques for the diagnosis of PNEA, concluding that such techniques can be ethically applied when certain conditions are met.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110184"},"PeriodicalIF":2.3,"publicationDate":"2024-12-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142791317","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}