Neuropsychological profile in tuberous sclerosis complex: a study of clinical and cognitive variables in a cohort from Brazil.

BACKGROUND: Tuberous sclerosis complex (TSC) is an autosomal dominant genetic disorder with a wide clinical, cognitive, and behavioral expressivity. OBJECTIVE: To assess the neuropsychological profile of individuals clinically diagnosed with TSC and the factors that could significantly impact their cognitive development. METHODS: A total of 62 individuals with ages ranging from 3 to 38 years were followed up in a tertiary attention hospital in Southern Brazil, and they were assessed using a standard battery and the Vineland Adaptive Behavior Scales, when intellectual disability was observed. RESULTS: History of epilepsy was found in 56 participants (90.3%), and 31 (50%) presented an intellectual disability. Among the other half of TSC individuals without intellectual disability, 8 (12.9%) presented borderline classification, 20 (32.2%) presented average scores, and 3 (4.8%) were above average. In total, 17 participants (27.4%) fulfilled the diagnostic criteria for autism spectrum disorder. The results of the multiple linear regression analysis suggested that seizures, age at diagnosis, visual perception, and general attention significantly impact cognitive performance indexes. CONCLUSION: The present study suggests that the occurrence of epileptic seizures and older age at diagnosis contribute to higher impairment in the domains of cognitive development, underlining the importance of early diagnosis and the prevention of epileptic seizures or their rapid control. The development of attentional skills, visual perception, and executive functions must be followed up.

ANTECEDENTES: O complexo da esclerose tuberosa (CET) é uma doença genética autossômica dominante com ampla expressividade clínica, cognitiva e comportamental. OBJETIVO: Avaliar o perfil neuropsicológico de indivíduos com diagnóstico clínico de CET e os fatores que poderiam impactar significativamente o seu desenvolvimento cognitivo. MéTODOS: Ao todo, 62 indivíduos com idades entre 3 e 38 anos foram acompanhados em um hospital terciário do Sul do Brasil e avaliados por meio de uma bateria padrão e das Escalas de Comportamento Adaptativo Vineland, quando observada deficiência intelectual. RESULTADOS: Encontrou-se histórico de epilepsia em 56 participantes (90,3%) e de deficiência intelectual em 31 (50%). Quanto à outra metade dos indivíduos com CET sem deficiência intelectual, 8 (12,9%) apresentaram classificação limítrofe, 20 (32,2%) apresentaram pontuações médias e 3 (4,8%) estavam acima da média. No total, 17 participantes (27,4%) preenchiam os critérios diagnósticos para o transtorno do espectro autista. Os resultados da análise de regressão linear múltipla sugeriram que as crises epilépticas, a idade ao diagnóstico, a percepção visual e a atenção geral impactam significativamente os índices de desempenho cognitivo. CONCLUSãO: Este estudo sugere que a ocorrência de crises epilépticas e a maior idade ao diagnóstico contribuem para um maior comprometimento nos domínios do desenvolvimento cognitivo, e destaca-se a importância do diagnóstico precoce e da prevenção das crises epilépticas ou do seu rápido controle. O desenvolvimento de habilidades de atenção, percepção visual e funções executivas deve ser acompanhado.

Cognitive performance in functional seizures compared with epilepsy and healthy controls: a systematic review and meta analysis.

BACKGROUND: Cognition is a core component of functional seizures, but the literature on cognition in this disorder has been heterogeneous, with no clear unifying profile emerging from individual studies. The aim of this study was to do a systematic review and meta-analysis of cognitive performance in adults with functional seizures compared with epilepsy (including left temporal lobe epilepsy) and compared with healthy non-seizure cohorts. METHODS: In this systematic review and meta-analysis, starting Feb 6, 2023, replicated and updated on Oct 31, 2023, a medical librarian searched MEDLINE, Embase, PsycINFO, and Web of Science. Inclusion criteria were full reports documenting raw or standardised cognitive test data in adults with functional seizures compared with adults with epilepsy, prospectively recruited healthy comparisons, or published norms. Grey literature was retained and there were no language or date restrictions. We excluded studies only reporting on mixed functional seizures and epilepsy, or mixed functional neurological samples, with no pure functional seizures group. Risk of bias was evaluated using a modified version of the Newcastle-Ottawa Scale. People with lived experiences were not involved in the design or execution of this study. This study is registered as CRD42023392385 in PROSPERO. FINDINGS: Of 3834 records initially identified, 84 articles were retained, including 8654 participants (functional seizures 4193, epilepsy 3638, and healthy comparisons 823). Mean age was 36 years (SD 12) for functional seizures, 36 years (12) for epilepsy, and 34 years (10) for healthy comparisons, and the proportion of women per group was 72% (range 18-100) for functional seizures, 59% (range 15-100) for epilepsy, and 69% (range 34-100) for healthy comparisons. Data on race or ethnicity were rarely reported in the individual studies. Risk of bias was moderate. Cognitive performance was better in people with functional seizures than those with epilepsy (Hedges' g=0·17 [95% CI 0·10-0·25)], p<0·0001), with moderate-to-high heterogeneity (Q[56]=128·91, p=0·0001, I2=57%). The functional seizures group performed better than the epilepsy group on global cognition and intelligence quotient (g=0·15 [0·02-0·28], p=0·022) and language (g=0·28 [0·14-0·43], p=0·0001), but not other cognitive domains. A larger effect was noted in language tests when comparing functional seizures with left temporal lobe epilepsy (k=5; g=0·51 [0·10 to 0·91], p=0·015). The functional seizures group underperformed relative to healthy comparisons (g=-0·61 [-0·78 to -0·44], p<0·0001), with significant differences in all cognitive domains. Meta regressions examining effects of multiple covariates on global cognition were not significant. INTERPRETATION: Patients with functional seizures have widespread cognitive impairments that are likely to be clinically meaningful on the basis of moderate effect sizes in multiple domains. These deficits might be slightly less severe than those seen in many patients with epilepsy but nevertheless argue for consideration of clinical assessment and treatment. FUNDING: Department of Veterans Affairs, Veterans Health Administration.

Quality of life and associated factors among people with epilepsy in Ethiopia: a systematic review and meta-analysis.

BACKGROUND: Epilepsy is a global health and economic burden with major problems that have an impact on physical, psychological, and social activities. Quality of life (QoL) is often disturbed and can be influenced by many factors, like anti-seizure medication side effects, the sociocultural environment, and various disease-related factors. The aim of this systematic review and meta-analysis is to provide an overview of the most recent information available regarding the pooled prevalence of poor quality of life and associated factors among adult people with epilepsy in Ethiopia. METHODS: The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) is an appropriate set of guidelines for reporting systematic reviews and meta-analyses. This systematic review and meta-analysis protocol was registered on the International Prospective Register of Systematic Reviews (PROSPERO) with CRD42024527914. To find publications for the systematic review and meta-analysis, we used both manual and electronic searches. The publications were searched by PubMed, MEDLINE, EMBASE, Cochrane Library, Scopus, and other grey publications were searched by Google Scholar. The Joanna Briggs Institute (JBI) for cross-sectional study quality assessment was employed to evaluate the methodological quality of the studies included in this review. The data was extracted in Microsoft Excel, and then it was exported into STATA 11.0 for analysis. A funnel plot and an objective examination of Egger's regression test were used to check for publication bias. RESULTS: We have included 7 studies conducted in Ethiopia with 2123 study participants, of whom 1163 (54.78%) were male individuals, and 1196 (56.34%) of the participants were living without marriage (either single, divorced, or widowed). The pooled prevalence of poor quality of life among people with epilepsy in Ethiopia is 45.07 (95% CI: 39.73-50.42%). Further, in subgroup analysis regarding the assessment tool of poor quality of life of people with epilepsy, QOLIE-31 accounted for 50.05% (95%CI: 46.65-53.45) and WHO QOL BREF accounted for 39.72% (95%CI: 27.67-51.78). Among the associated factors, being unable to read and write, anxiey and depression were significantly linked to the quality of life of people with epilepsy. CONCLUSION: This review found that there was a high pooled prevalence of poor quality of life related to people with epilepsy in Ethiopia. This study may provide further information to concerned bodies that do early screening and manage the quality of life of individuals with epilepsy. Also, screening and intervention for anxiety and depression problems should be considered in regular epilepsy care management.

The effect of illness-related fears of parents of children with epilepsy during the COVID-19 period on their children's seizure self-efficacy.

BACKGROUND: Seizure-related self-efficacy is the belief individuals have that they can perform the necessary actions to cope effectively with their seizures. Determining, developing, strengthening, and maintaining the perception of self-efficacy in children with epilepsy facilitates the child's disease management and their ability to cope with it. This study aimed to assess the impact of epilepsy-related parental fears during the COVID-19 period on the seizure self-efficacy of their children. METHODS: A total of 321 children with epilepsy and their parents participated in this descriptive, correlational, and cross-sectional study. Data were collected through the Descriptive Information Form, the Seizure Self-Efficacy Scale for Children (SSES-C), and the Epilepsy-Related Fears in Parents Questionnaire (EFPQ). Descriptive statistics, including frequency, percentage, and mean scores, were used to analyze the characteristics of the children and their parents. The Shapiro-Wilk test was utilized to assess the normality of the scale data. Pearson correlation analysis examined the relationship between parents' epilepsy-related fears and their children's seizure self-efficacy, while multiple regression analysis determined the effect of parental fears on children's seizure self-efficacy. RESULTS: The mean age of children included in the study was 12.65±2.37 years. Analysis revealed a strong and significant negative correlation between parents' epilepsy-related fears during the COVID-19 period and the seizure self-efficacy of their children. In the model created with regression analysis, The mean scores of parents on the short-term fears of parents about epilepsy of the EFPQ explained 85 % of children's seizure self-efficacy. The mean scores of parents on the long-term fears of parents about epilepsy of the EFPQ explained 85 % of children's seizure self-efficacy. It was determined that all of these variables together explained 85 % of the seizure self-efficacy of children with epilepsy. CONCLUSION: The findings of the study underscore the importance of addressing parents' fears regarding epilepsy, emphasizing the need for healthcare professionals to be aware of and provide support for these concerns. Future studies should focus on interventions to enhance the seizure self-efficacy of children with epilepsy.

Fear of Coronavirus Disease 2019 among People with Epilepsy.

BACKGROUND: Epileptic patients are worried about getting coronavirus disease 2019 (COVID-19) infection and have recurrent thoughts of becoming infected with this virus. MATERIALS AND METHODS: This study involved 205 patients diagnosed with epilepsy. The questionnaire included questions about sociodemographic information to analyze the demographic composition. The evaluation of the fear of COVID-19 infection was conducted utilizing the Fear of COVID-19 Scale (FCV-19S). RESULTS: The study enrolled 113 participants (55.10% male and 44.90% female) with an average age of 27.34 years. The mean fear score (FCV-19S) was 14.25, and fear of COVID-19 infection was present in 41 (20%) participants with a mean [standard deviation (SD)] FCV-19S score of 23.19 (3.33). Participants who were >45 years of age, married, graduated, and had low family income were significantly more likely to be fearful of COVID-19. Using logistic regression, education, marital status, and family income were identified as risk factors for having significant fear of coronavirus infection. CONCLUSION: Given the notable prevalence of COVID-19-related fear within the epilepsy community, it is advisable to develop a well-thought-out strategy for promptly identifying vulnerable patients who may be at an increased risk of experiencing fear and anxiety.

Changes in overlap of subjective and objective cognition over time in epilepsy surgery candidates.

PURPOSE: Subjective and objective cognition often show weak overlap in persons with epilepsy (PWE). Over- as well as underestimation may occur. In particular after epilepsy surgery, objective memory decline is often not subjectively reported. Additionally, studies on how concordance of subjective and objective cognition changes over time are missing. Therefore, we study the extent of concordance in operated and non-operated PWE over time. METHODS: Candidates for resective epilepsy surgery were assessed between 03/18 and 12/20 (T1) with self-report questionnaires and underwent a neuropsychological examination. For 21 operated as well as 27 non-operated PWE follow-up data was obtained one to three years later (T2). Concordance of attention and memory were compared between groups and time points. Moreover, reliable change was calculated and compared between groups. RESULTS: Of the total sample, 42 % rated their attention performance realistically and 25 % showed memory concordance. Differences in patterns of over- and underestimation between groups and over time occurred for attention, but not for memory. Overestimation of memory was more frequent in operated than non-operated PWE, especially at T2 (67% vs. 11 %). In the operated group, we mainly observed reliable improvement in subjective cognition and decline in objective memory, whereas non-operated PWE showed more frequently decline of simple attention. Reliable subjective and objective change did not co-occur. CONCLUSION: Concordance of subjective and objective cognition is low. Over- as well as underestimation may persist over time. Domain-specific perspectives are necessary. Tendencies of operated PWE to develop overestimation of memory after surgery should be considered in neuropsychological interventions.

Transitioning from paediatric to adult care in epilepsy: A qualitative study of adolescent experiences.

OBJECTIVE: Transition into adulthood and adult medical care is an important step in the life of young people with epilepsy. We aimed to gain a better insight into the lived experience of the transition to adulthood and adult medical care in epilepsy in Sweden, to improve future transitional care. METHODS: A cross-sectional observational study with digital focus-group meetings and interviews with young people with epilepsy (16-22 years, n = 37) prior to, or after the transfer to adult care, or their primary caregivers if they had intellectual disability. We used reflexive thematic analysis to analyse the experiences and expectations on the transition to adulthood and adult medical care. RESULTS: The results of the thematic analysis included four key areas during transition to adulthood and adult care for young persons with epilepsy: (I) worries on coming changes and future, (II) transfers are not smooth and adult care is less integrated, (III) epilepsy is part of a bigger picture, and (IV) parental roles change. In those with intellectual disability, parents experienced a stressful process and had to increase their efforts to coordinate all care contacts in adult care. Here, epilepsy was often experienced as a minor part of a more complex disease picture, where neurodevelopmental issues were often the primary concern. SIGNIFICANCE: Transition in epilepsy is often complex due to the large burden of co-occurring disease, specifically intellectual disability and neuropsychiatric diagnoses. Transfer to adult care is experienced as unplanned and participants experience uncertainty, indicating a need for an improved transition process. As effective interventions are known in other chronic diseases, future studies should focus on the evaluation of how these approaches can be feasible and effective in young people with epilepsy.

Physical fitness in Indian women with epilepsy on anti-seizure medications and its association with reproductive status, quality of life and stigma: A cross-sectional study.

PURPOSE: To determine the status of physical fitness, reproductive abnormalities, QOL and epilepsy associated stigma in women with epilepsy (WWE) and their association with ASM therapy and seizure frequency. METHODS: This cross-sectional study included WWE of reproductive age (18-50 years) on antiseizure medications (ASMs) for at least three months before enrolment. Physical fitness was assessed using International Physical Activity Questionnaires (IPAQ) and Body composition analysis. Subjects were interviewed for menstrual abnormalities [menstrual disturbance or Polycystic Ovary Syndrome (PCOS)/hirsutism]. Validated questionnaires were used for assessment of, QOL (QOLIE-10) and Stigma in epilepsy (Epilepsy Stigma Scale). Sub-group analysis was done to compare the above parameters on the basis of a) type of therapy (mono or polytherapy), b) type of ASMs treatment (conventional, newer, or conventional + newer ASMs), and c) seizure type and (d) seizure frequency. Correlation and regression analysis were done to find out the association among different variables with physical fitness. RESULTS: The overall prevalence of poor physical fitness, reproductive abnormalities, worsened QOL and stigma in the enrolled WWE (n = 203) were 21.18 %, 20.19 %, 52.7 %, and 21.67 %, respectively. Sub-group analysis revealed that WWE on monotherapy (n = 99) had higher median IPAQ score (p = 0.002), comparatively less reproductive abnormalities (24.03 %, p = 0.008), and higher stigma (24.03 %, p = 0.04) than polytherapy group. WWE on conventional ASMs had significantly higher IPAQ scores compared to newer and conventional + newer ASMs groups (p = 0.02). The prevalence of poor physical fitness and stigma was significantly higher in WWE with higher number of seizures (p = 0.007, <0.001, respectively). No significant difference in QOL was observed on the basis of ASM type and therapy; however, WWE with generalized onset seizures had worsened QOL compared to those with focal onset seizures (p = 0.04). A significant negative correlation was found among seizure frequency and IPAQ score in WWE (p = 0.04). CONCLUSION: WWE on polytherapy were physically less active, higher occurrence of reproductive abnormalities, and stigma compared to the monotherapy group. WWE with higher seizure frequency had poor physical fitness, and higher stigma compared to those with lesser number of seizures. These findings may aid value in optimization of ASM treatment in WWE of reproductive age.

Evaluation of social inclusion in Brazilian adult women with epilepsy: Perception of stigma and quality of life.

Epilepsy is a chronic disease characterized by recurrent epileptic seizures that can affect the perception of stigma and compromise the quality of life of those living with it. In addition, sociodemographic factors such as employment and maintaining a job, education, and the autonomy to drive vehicles are often impaired. OBJECTIVE: To assess the social inclusion of adult women with epilepsy in relation to the perception of stigma and quality of life, and the clinical aspects of the disease. METHODOLOGY: Data from 70 adult Brazilian women with epilepsy regarding aspects related to their social inclusion were verified. Such data were linked to clinical aspects and scores from the questionnaires: Quality of Life in Epilepsy Inventory 31 (QOLIE-31) and the Epilepsy Stigma Scale (ESS), with a significance level of p < 0.05. RESULTS: Average age of 45.5 years, 40 (57.1 %) women were divorced/single/widowed, 31 (44.3 %) women had less than 10 years of formal education, 32 (45.7 %) women had no income, and 57 (81.4 %) did not have a driver's license. The age at the time of the first seizure was 18 years, the seizures were focal in 46 (65.7 %) cases, and 26 (37.1 %) cases were seizure-free in the last year. A high number of women reported that the diagnosis of epilepsy negatively influenced aspects of autonomy such as the possession of a driver's license and going out alone. Longer duration of epilepsy was associated with lower education, not having children, and lower scores on the QOLIE-31. Higher scores on the QOLIE-31 were correlated with lower frequency of seizures and with the age at the time of the first seizure. Values in the dimension - energy and fatigue of the QOLIE-31 were significantly lower in the group with less independence compared to the other two groups with more independence, in latent class analyses (ANOVA, adjusted for age 42.1 ± 35.6 vs 57.2 ± 28.4 vs 73.9 ± 23.8, p = 0.0295). DISCUSSION: Clinical aspects of epilepsy and having a partner, autonomy, and independence such as driving vehicles are factors that contribute to social inclusion and to the perception of a better quality of life for adult women with epilepsy. CONCLUSION: It was observed that having a partner, autonomy, and independence such as driving vehicles are factors that contribute to social inclusion and to the perception of a better quality of life for adult women with epilepsy.

Investigating family resilience factors for enhancing family adaptation in children with epilepsy.

PURPOSE: To identify and understand the key family resilience factors that contribute to the improved family adaptation of children with epilepsy. METHODS: Parent of children with epilepsy treated in the outpatient unit and general ward at Severance Children's Hospital in Seoul, Korea, completed a structured online questionnaire between April and May 2023. This study examined risk (epilepsy severity, time since diagnosis, parental depression, and perceived stigma) and protective factors (child temperament, epilepsy knowledge, family communication skills, parent's educational level, monthly household income, and social support) of family adaptation based on Patterson's Family Resilience Model. Furthermore, general characteristics such as daily caregiving time, perceived parental health, family type, and primary caregiver role were analyzed. RESULTS: This study included 131 participants with a mean age of 41.79 ± 5.77 years, with children having an average age of 9.19 ± 4.94 years. The regression model was significant, and revealed the impact of communication skills, social support, and primary caregivers other than parents. Moreover, a shorter time since diagnosis has a more positive impact on family adaptation. CONCLUSIONS: To improve family adaptation in children with epilepsy, the focus should be placed on improving communication skills, increasing social support, and providing access to external support services. Furthermore, families expecting longer illness duration require proactive measures to support them. These findings could guide future strategies to enhance adaptation in families with children with epilepsy.

Impact of and research priorities in early onset epilepsy: An investigation of parental concerns.

[Background and aim] Early onset epilepsy is a neurological condition with significant developmental consequences, and presents affected children and families with challenges which pervade many aspects of family life. Whilst the concerns of parents and the impact on quality of life is well documented in qualitative research, little emphasis has been placed on the context of 'early onset', and the implications of these concerns for research priority setting. We aimed to explore parental perspectives regarding concerns and the impact of early onset epilepsy on the child and family, and to identify priorities for future paediatric epilepsy research. [Methods] The Brain development in Early Epilepsy: Parent Priorities (BEE-PP) project employed a mixed methods approach to collect information on parents' experience of having a child diagnosed with early onset epilepsy before 36 months old and aged up to 16 years old. Parents completed an online survey (n = 15) followed by a focus group (n = 5) to explore their main concerns regarding early onset epilepsy, the impact on family life and research priorities. [Results] A thematic analysis of the focus group data generated eight themes related to concerns of parents, the impact on the family and research priorities. The three main concerns identified were the expected trajectory of their child's development, a lack of seizure control following diagnosis and adverse behavioural side effects of medication. Within family life, early onset epilepsy had an impact on sibling autonomy and psychosocial adaptation, poorer parental wellbeing and restricted social and personal activities. The need for clearer information regarding their child's developmental trajectory, and managing the side effects of medication and their interactions with behaviour over time were topics of priority for future epilepsy research. [Interpretation] The impact of early onset epilepsy on the family is pervasive and requires the provision of appropriate healthcare service-led support for families to improve quality of life and children's adjustment to epilepsy. Regular monitoring of the concerns of parents and the impact of the diagnosis would be beneficial for addressing epilepsy-related and psychosocial needs of the wider family throughout their child's development. Implications for future research priority setting with regards to improved clinician-to-parent information sharing and managing the behavioural side effects of medication are discussed.

The relationship of psychiatric comorbidities and symptoms, quality of life, and stigmatization in patients with epilepsy.

OBJECTIVE: Research around the frequency of psychiatric diseases and psychosocial consequences caused by seizures and stigmatization in patients with epilepsy is important, in terms of multidimensional evaluation of the condition, increasing quality of life, and controlling the frequency of seizures. This prospective study aimed to evaluate relationship between comorbid psychiatric diseases and clinical and sociodemographic data, patients' quality of life and perceived stigma in patients with epilepsy. METHODS: In this prospective single-center study, we evaluated clinical and demographic data, and characteristics of epilepsy. We used the Symptom Check List 90-Revised (SCL-90-R) as a screening test for psychiatric comorbidities and the Mini International Neuropsychiatric Interview (MINI) test for patients who had an SCL90-R general symptom index (GSI) score of ≥1. The frequency of psychiatric comorbidities, the association between comorbid psychiatric disorders and quality of life, and the level of stigmatization in patients with epilepsy was assessed using the Quality of Life in Epilepsy Inventory (QOLIE-10) and Perceived Stigma Scale. RESULTS: SCL90-R GSI scores of ≥1 were found in 122 of 300 patients. Psychiatric comorbidities were found in 24.8% (n = 69) of patients with epilepsy in the MINI test, major depression was found in 16.9 %, (n = 47), and generalized anxiety disorder was the most common (5.7 %, n = 16). The number of anti-seizure medications (p = 0.007), high seizure frequency (p = 0.01), seizure in previous 12 months (p = 0.003), history of epilepsy surgery (p = 0.032) and psychiatric disease (p < 0.001), and high perceived stigma (p < 0.001) and QOLIE-10 (p < 0.001) scores were all correlated with psychiatric comorbidities. CONCLUSIONS: According to the results of our study, an important correlation was determined between psychiatric comorbidities and a history of psychiatric disease, poor quality of life, and high perceived stigma scores in patients with epilepsy. This suggests that screening patients for comorbid psychiatric conditions in epilepsy outpatient clinics is critical, as is establishing a strong collaboration with the psychiatry clinic, to reduce psychosocial issues and the economic burden of stigmatization and improve quality of life.

"One size does not fit all" - Barriers to and facilitators of physical activity in adolescents with epilepsy.

OBJECTIVE: To explore the barriers to physical activity and to identify the support needed to facilitate physical activity in adolescents with epilepsy (AWE). METHODS: AWE (aged 11-16 years) and their caregivers completed survey-based open questions regarding perceived barriers to, and facilitators of physical activity in young people with epilepsy. The responses were analysed using Thematic Analysis. RESULTS: Themes concerning barriers to physical activity included concerns about seizure safety, general anxiety and anxiety related to seizures, stigma/negative attitudes associated with having epilepsy, tiredness, and perceived lack of physical competence. Themes regarding the support needed to facilitate physical activity included better education amongst staff/coaches about epilepsy (e.g., seizure management/prevention, associated fatigue/tiredness), improvements in societal attitudes towards epilepsy, flexibility/tailoring of activities to the child's needs (e.g., need for breaks), and peer support for young people with epilepsy to encourage engagement in physical activity. CONCLUSIONS: There is a perception among AWE and caregivers, that significant barriers exist with regard to engaging in physical activity for young people with epilepsy. Barriers are related to concerns about seizure management but also wider safety and social issues. A number of facilitators were identified to promote physical activity engagement in AWE, including education for staff and caregivers, peer support, and tailoring activities to the adolescent's needs. There is a need to develop interventions to reduce barriers to physical activity in young people with epilepsy.

Neurologists' and obstetricians' perspectives and current practices in breastfeeding counseling in women with epilepsy.

OBJECTIVES: In this study, we aimed to characterize practice patterns of neurologists and obstetricians in breastfeeding (BF) counseling in women with epilepsy (WWE) and explore factors that may influence physician counseling behaviors. METHODS: We conducted a cross-sectional study of neurologists and obstetricians via an anonymous survey from September 2021 until November 2021. A survey was developed to explore the following areas in WWE: current physicians' BF counseling patterns, physician-specific factors affecting BF counseling, and patient-specific factors and their impact on BF counseling. Descriptive statistics were generated for each survey question. Responses from neurologists and obstetricians were compared. Odds ratios (OR) and confidence intervals (CI) were calculated to assess factors that influence BF counseling in WWE. RESULTS: A total of 185 physicians participated in the study and consisted of 91 (49.2 %) neurologists, 83 (44.8 %) obstetricians, and 11 (6 %) participants from other specialties. Ninety-four percent (94 %) of neurologists and 92 % of obstetricians indicated that they provide BF safety counseling to WWE primarily during preconception and occasionally during pregnancy. Fifty-six percent of obstetricians reported being very comfortable with BF counseling in WWE, compared to 68 % of neurologists. Both groups rated research and clinical practice guidelines as two factors that have major impact on BF counseling; however, less than half (45 %) of neurologists are very familiar with the current literature and only a quarter (24 %) of obstetricians are very familiar with current literature regarding safety of BF in WWE. Regarding barriers to BF counseling, relative to neurologists, obstetricians believe that delivery of conflicting opinions among medical specialists about BF safety is a barrier that may impede effective BF counseling in WWE [OR = 2.78 (95 % CI: 1.30,5.95), adjusted p value (P = 0.008)]. SIGNIFICANCE: Variable knowledge of current literature in BF in WWE and low comfort levels in BF counseling among various specialists, as well as perceived inadequate data and clinical practice guidelines, may contribute to suboptimal BF counseling and impact health outcomes in WWE and their children.

Utility of automated memory measures in identifying cognitive impairment in adults with epilepsy.

OBJECTIVE: Cognitive impairment is prevalent in epilepsy and often presents at the time of initial diagnosis. This study sought to validate brief, self-administered, iPad-based recognition memory tasks in a sample of patients with epilepsy and to examine their screening utility in identifying patients with cognitive impairment. METHODS: The Words and Faces tests were administered to 145 adult patients with epilepsy along with a neuropsychological battery. Correlation analyses examined the convergent and divergent validity of the Words and Faces tests, and a series of logistic regression analyses examined discriminative ability in identifying patients with and without cognitive impairments on neuropsychological measures. Patient performance was compared to that of a healthy control group (n = 223), and the relationship between the Words and Faces test performance and disease-related variables (i.e., antiepileptic medication burden, seizure lateralization/localization) was examined. RESULTS: The Words and Faces tests were positively correlated with traditional paper-and-pencil neuropsychological measures of episodic memory, with generally moderate to large effect sizes (r > .40), while correlations between the Words and Faces tests and non-memory measures were generally small in magnitude (r < .30). Patients with epilepsy had significantly lower scores on Words and Faces tests compared to healthy controls, and performance was associated with antiepileptic medication burden and seizure localization. The Words and Faces tests demonstrated good predictive accuracy in identifying any cognitive impairment (concordance (c) statistic = .77) and excellent predictive accuracy (c = .85) in identifying patients with impairments on traditional memory measures. The Words and Faces tests also demonstrated reasonable discrimination for impairments in non-memory domains including executive function, language, attention, processing speed, and visuospatial ability (c = .62 -.70). Importantly, the Words and Faces Immediate Index performed just as well as the Total Score (which included delayed memory performance), suggesting a short version of this measure is sufficient for identifying patients with cognitive impairment. CONCLUSIONS: The Words and Faces tests are valid, computerized tools that can be used to screen for memory and other cognitive impairment in adults with epilepsy.

Differences in factors associated with insomnia symptoms between patients with epilepsy with and without depressive symptoms.

OBJECTIVE: To determine if insomnia-related factors differ depending on the presence of depression in patients with epilepsy. METHODS: This cross-sectional multicenter study collected data on depressive symptoms, insomnia symptoms, and excessive daytime sleepiness, which were defined as a Patient Health Questionnaire-9 (PHQ-9) score of ≥ 10, an Insomnia Severity Index (ISI) score of ≥ 15, and an Epworth Sleepiness Scale (ESS) of ≥ 11, respectively. Further, uncontrolled seizures were defined as one or more seizures per month during antiseizure medications treatment. A stepwise logistic regression analysis was conducted, with a logistic regression with interaction terms performed to identify differences in insomnia-related factors depending on depressive symptoms. RESULTS: Of 282 adults with epilepsy (men, 58 %; mean age, 40.4 ± 13.9 years), a PHQ-9 score ≥ 10, an ISI score ≥ 15, an ESS score ≥ 11 were noted in 23.4 % (n = 66), 20.2 % (n = 57), and 12.8 % (n = 36), respectively. More patients with depressive symptoms had an ISI score ≥ 15 (56.1 % vs. 9.3 %; p < 0.001) than those without. In multiple logistic regression, uncontrolled seizures (odds ratio [OR], 4.896; p < 0.01), daytime sleepiness (OR, 5.369; p < 0.05), and a history of psychiatric disorders (OR, 3.971; p < 0.05) were identified as significant factors that were more likely to be associated with an ISI score ≥ 15; however, this was only true in patients without depressive symptoms. In contrast, use of perampanel (OR, 0.282; p < 0.05) was less likely associated, while female sex (OR, 3.178; p < 0.05) was more likely associated with an ISI score ≥ 15 only in patients with depressive symptoms. CONCLUSIONS: Insomnia-related factors in patients with epilepsy may differ between patients with and without depression. Our findings of different insomnia-related factors based on the presence of depression may facilitate the management of patients with epilepsy.

Psychosocial outcomes six months after epilepsy surgery: A perspective on coping strategies.

OBJECTIVE: Epilepsy negatively affects the social functioning of patients. Epilepsy surgery is a treatment with superior rates of seizure freedom. The psychosocial outcomes after epilepsy surgery depend on several factors, including the patient's coping style. It is important to identify the patients who are at risk of experiencing psychosocial difficulties after epilepsy surgery and consult them for psychiatric interventions. This study aimed to assess changes in social adaptation, felt stigma, self-esteem, and self-efficacy after epilepsy surgery, and the effect of coping strategies, sociodemographic and epilepsy-related variables, and post-surgical seizure outcomes on these results. METHODS: Thirty adult patients with temporal lobe epilepsy who were candidates for surgery were included in the study (mean age: 33.07, mean seizure onset age: 17.2, mean duration of epilepsy: 15.8). The patients were assessed before and 6 months after epilepsy surgery using the Epilepsy Self-Efficacy Scale, Social Adaptation Self-Evaluation Scale, Rosenberg Self-Esteem Scale, Felt Stigma Scale, and Coping Orientation to Problems Experienced Inventory. RESULTS: The patients' self-efficacy levels were increased after surgery (p = 0.005). Postsurgical social adaptation levels were associated with higher positive reinterpretation and growth, active coping, and planning (p = 0.016, p = 0.005, p = 0.002, respectively). Postsurgical self-efficacy levels were positively associated with active coping and planning (p = 0.003, p = 0.035, respectively). Postsurgical self-esteem (p = 0.012, p = 0.049, p = 0.034, respectively) and stigma (p = 0.029, p = 0.014, p = 0.027, respectively) were negatively associated with positive reinterpretation and growth, active coping, and planning. Furthermore, being employed presurgical period was associated with better postsurgical social adaptation (p = 0.004). CONCLUSIONS: The psychosocial outcomes after epilepsy surgery depend not only on seizure outcomes. Understanding the factors beyond seizure freedom, allows healthcare professionals to have a pivotal role in exploring and managing patients' expectations, fostering a more comprehensive and realistic dialogue about potential outcomes. Considering employed patients had better psychosocial outcomes, we suggest patients' families, healthcare professionals, and epilepsy support organizations should work collaboratively to support people with epilepsy in terms of providing job opportunities.

Assessment of stigmatization and self-esteem in patients with epilepsy.

AIM: This study was conducted to examine the relationship between stigmatization and self-esteem of patients with epilepsy. METHODS: This cross-sectional study was conducted with 216 patients at a university hospital in Van, a province in eastern Turkey. The researcher prepared the data collection tools, including a personal information form, Jacoby Stigma Scale and the Rosenberg self-esteem scale, in line with the literature. The Jacoby stigma scale was applied to assess stigma. Data analysis was performed using t-test, one-way analysis of variance (ANOVA), and Tukey, LSD coefficient. RESULTS: The mean total stigmatization score of patients with epilepsy was 21.11 ± 10.00, while the mean total self-esteem score was 20.26 ± 5.16. The study found a significant negative correlation between stigmatization and self-esteem scores (r = -0.411; p < 0.05). CONCLUSION: The research study revealed that patient with epilepsy have a high perception of stigma and low selfesteem levels.

Impaired executive functioning in children of women with epilepsy.

OBJECTIVE: While neurodevelopmental symptoms are often seen in children of mothers with epilepsy, research specifically addressing executive function (EF) in this population is limited. This study aims to investigate EF in children of mothers with epilepsy, both with and without fetal exposure to anti-seizure medications, compared to typically developing children whose mothers do not have epilepsy. METHODS: We evaluated EF in children aged 8 to 17 years born to mothers with clinically validated diagnoses of epilepsy, using the Behavior Rating Inventory of Executive Function completed by the mothers. The results were then compared to a typically developing control group at the same age living in the same geographic area. RESULTS: The results showed significantly higher levels of EF problems in children of mothers with epilepsy who were exposed (p = 0.005, d = 0.63), and unexposed (p = 0.001, d = 0.74) to anti-seizure medications during pregnancy, compared to typically developing children. There was no significant difference in EF problems between the exposed and unexposed groups. These findings remained statistically significant after adjusting for mothers' education levels, and when excluding participants exposed to valproate during pregnancy. SIGNIFICANCE: This study highlights the increased risk of EF problems in children of mothers with epilepsy, independent of exposure to anti-seizure medications. Findings underscore the importance of continuous monitoring of EF in these children and highlights the need for further research into the diverse factors affecting EF development in this group.

The Role of Pharmacists' Interventions in Increasing Medication Adherence of Patients With Epilepsy: A Scoping Review.

OBJECTIVES: Epilepsy is a chronic disease that requires long-term treatment and intervention from health workers. Medication adherence is a factor that influences the success of therapy for patients with epilepsy. Therefore, this study aimed to analyze the role of pharmacists in improving the clinical outcomes of epilepsy patients, focusing on medication adherence. METHODS: A scoping literature search was conducted through the ScienceDirect, PubMed, and Google Scholar databases. The literature search included all original articles published in English until August 2023 for which the full text was available. This scoping review was carried out by a team consisting of pharmacists and neurologists following the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) Extension for Scoping Reviews and the Joanna Briggs Institute guidelines, including 5 steps: identifying research questions, finding relevant articles, selecting articles, presenting data, and compiling the results. RESULTS: The literature search yielded 10 studies that discussed pharmacist interventions for patients with epilepsy. Five articles described educational interventions involving drug-related counseling with pharmacists. Two articles focused on similar pharmacist interventions through patient education, both verbal and written. Three articles discussed an epilepsy review service, a multidisciplinary intervention program involving pharmacists and other health workers, and a mixed intervention combining education and training with therapy-based behavioral interventions. CONCLUSIONS: Pharmacist interventions have been shown to be effective in improving medication adherence in patients with epilepsy. Furthermore, these interventions play a crucial role in improving other therapeutic outcomes, including patients' knowledge of self-management, perceptions of illness, the efficacy of antiepileptic drugs in controlling seizures, and overall quality of life.