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.

Has Treatment Seeking Behaviour Changed in People Living with Epilepsy? Experience of People Living with Epilepsy Attending Adult Neurology Clinics in Enugu.

BACKGROUND: Over the years efforts has been made through public health education to change the knowledge, attitude and practice of epilepsy and seizures among the populace in Nigeria. One surrogate method of reviewing the impact of these educational interventions includes changes in treatment-seeking behavior of People Living With Epilepsy and the reasons for their choices of treatment. METHODS: This was a cross-sectional descriptive study. Data were collected from People Living With Epilepsy attending the medical outpatient clinics in two tertiary hospitals in Enugu, Enugu State southeast Nigeria. RESULTS: A total 276 people living with epilepsy were recruited with a mean age of 30.1 years and a median age of 25 years. After the onset of epilepsy, 76(27.5%) and 70(25.4%) visited general hospitals and teaching hospitals respectively, while prayer houses and traditional healing centers were first visited by 54(19.6%) and 40(14.5%) respectively. As a second choice of care 9(3.3%) and 13(4.7%) visited prayer houses and traditional healing centers. Only 42(15.2%) selected their treatment center because they were confident of getting a cure however, this was highest for those that visited traditional healing centers 11(27.5%). The age of onset of epilepsy positively correlated with selecting orthodox treatment at the choice of care, while occupational status negatively correlated with selecting orthodox care at the same period. CONCLUSIONS: Health care seeking behaviors among PLWE in Southeast Nigeria might have changed over the years as more people living with epilepsy were more likely to select orthodox treatment compared to non-orthodox means of treatment.

CONTEXTE: Au fil des ans, des efforts ont été déployés par le biais de l'éducation en santé publique pour changer les connaissances, les attitudes et les pratiques concernant l'épilepsie et les crises d'épilepsie parmi la population au Nigeria. Une méthode indirecte pour examiner l'impact de ces interventions éducatives comprend les changements dans le comportement de recherche de traitement des personnes vivant avec l'épilepsie et les raisons de leurs choix de traitement. MÉTHODES: Il s'agit d'une étude descriptive transversale. Les données ont été collectées auprès de personnes vivant avec l'épilepsie fréquentant les cliniques de consultations externes médicales dans deux hôpitaux tertiaires à Enugu, dans l'État d'Enugu, au sud-est du Nigeria. RÉSULTATS: Au total, 276 personnes vivant avec l'épilepsie ont été recrutées, avec un âge moyen de 30,1 ans et un âge médian de 25 ans. Après le début de l'épilepsie, 76 (27,5 %) et 70 (25,4 %) ont consulté respectivement des hôpitaux généraux et des hôpitaux universitaires, tandis que les lieux de prière et les centres de guérison traditionnelle ont été les premiers consultés par respectivement 54 (19,6 %) et 40 (14,5 %). Comme deuxième choix de soins, 9 (3,3 %) et 13 (4,7 %) ont consulté des lieux de prière et des centres de guérison traditionnelle. Seuls 42 (15,2 %) ont choisi leur centre de traitement parce qu'ils étaient confiants d'obtenir une guérison, cependant, ce taux était le plus élevé pour ceux qui ont consulté les centres de guérison traditionnelle (11 soit 27,5 %). L'âge de début de l'épilepsie était positivement corrélé avec la sélection d'un traitement orthodoxe comme choix de soins, tandis que le statut professionnel était négativement corrélé avec la sélection de soins orthodoxes au même moment. CONCLUSIONS: Les comportements de recherche de soins parmi les personnes vivant avec l'épilepsie dans le sud-est du Nigeria ont peut-être changé au fil des ans, car davantage de personnes vivant avec l'épilepsie étaient plus susceptibles de choisir un traitement orthodoxe par rapport aux moyens de traitement non orthodoxes. MOTS-CLÉS: Épilepsie, Comportement de recherche de soins, Guérisseurs traditionnels, Lieux de prière, Médecine orthodoxe, sud-est du Nigeria.

Knowledge, attitudes, and practices of caregivers with children diagnosed with epilepsy attending a pediatric outpatient clinic: a descriptive, cross-sectional, questionnaire-based study in Addis Ababa, Ethiopia.

BACKGROUND: Caregivers' knowledge and attitudes influence help-seeking behavior and treatment decisions of patients with epilepsy, which in turn significantly impacts epilepsy care. In Ethiopia, epilepsy is often misunderstood, associated with misconceptions and accompanied by persistent negative attitudes. The objective of this study is to assess the knowledge, attitude, and practice of caregivers of children with epilepsy. METHODS: We conducted a hospital-based survey at the Yekatit 12 Hospital Pediatric Neurology Clinic, Addis Ababa, Ethiopia, between May and July 2022. We invited caregivers of children with epilepsy taking one or more daily anti-seizure medications to participate. Caregivers were invited to complete a structured questionnaire with guidance from a trained nurse to estimate knowledge and attitudes towards epilepsy and its treatment. Knowledge and attitudes were categorized as "good" and "favorable" (correct answers to ≥ 50% of questions) or "bad" and "unfavorable" (< 50% correct answers), respectively. Attitudes towards standard care versus non-standard (e.g., spiritual) care were also estimated. RESULTS: A total of 120 caregivers completed the questionnaire. Many caregivers were familiar with the term 'epilepsy', with more than half (51.7%) having heard or read about it previously. The reported causes of epilepsy varied, with birth injury being the most common cause (44 out of 120 caregivers). Notably, there was association between the caregiver's gender and their knowledge score, with a p-value = 0.05. Caregivers exposed to information about epilepsy through hearing or reading demonstrated significantly higher levels of knowledge, with a p-value < 0.001. Additionally, knowing someone with epilepsy other than the index child was significantly associated with higher knowledge scores (p-value < 0.001). The study also revealed negative attitudes toward epilepsy: for example, 56.7% of surveyed caregivers believed it is unlikely that a child with epilepsy has normal cognitive abilities and 39.1% believed they should never be allowed to attend regular school. Additionally, a high proportion of caregivers (70%) sought alternative treatments (e.g., spiritual help) alongside standard medical care. CONCLUSIONS: A significant knowledge gap was identified among caregivers, revealing prevalent misconceptions and negative attitudes. Improving epilepsy awareness, attitudes, and practices among caregivers will potentially contribute to overall improved quality of life for children with epilepsy.

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.

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 during usual epilepsy care for anxiety or depression symptoms: Secondary patient-reported outcomes in a randomized trial of remote assessment methods.

BACKGROUND AND OBJECTIVES: Anxiety and depression are highly prevalent and impactful in epilepsy. American Academy of Neurology quality measures emphasize anxiety and depression screening and quality of life (QOL) measurement, yet usual epilepsy care QOL and anxiety/depression outcomes are poorly characterized. The main objective was to assess 6-month QOL, anxiety and depression during routine care among adults with epilepsy and baseline anxiety or depression symptoms; these were prespecified secondary outcomes within a pragmatic randomized trial of remote assessment methods. METHODS: Adults with anxiety or depression symptoms and no suicidal ideation were recruited from a tertiary epilepsy clinic via an electronic health record (EHR)-embedded process. Participants were randomized 1:1 to 6 month outcome collection via patient portal EHR questionnaires vs. telephone interview. This report focuses on an a priori secondary outcomes of the overall trial, focused on patient-reported health outcomes in the full sample. Quality of life, (primary health outcome), anxiety, and depression measures were collected at 3 and 6 months (Quality of Life in Epilepsy-10, QOLIE-10, Generalized Anxiety Disorder-7, Neurological Disorders Depression Inventory-Epilepsy). Change values and 95 % confidence intervals were calculated. In post-hoc exploratory analyses, patient-reported anxiety/depression management plans at baseline clinic visit and healthcare utilization were compared with EHR-documentation, and agreement was calculated using the kappa statistic. RESULTS: Overall, 30 participants (15 per group) were recruited and analyzed, of mean age 42.5 years, with 60 % women. Mean 6-month change in QOLIE-10 overall was 2.0(95 % CI -6.8, 10.9), and there were no significant differences in outcomes between the EHR and telephone groups. Mean anxiety and depression scores were stable across follow-up (all 95 % CI included zero). Outcomes were similar regardless of whether an anxiety or depression action plan was documented. During the baseline interview, most participants with clinic visit EHR documentation indicating action to address anxiety and/or depression reported not being offered a treatment(7 of 12 with action plan, 58 %), and there was poor agreement between patient report and EHR documentation (kappa=0.22). Healthcare utilization was high: 40 % had at least one hospitalization or emergency/urgent care visit reported and/or identified via EHR, but a third (4/12) failed to self-report an EHR-identified hospitalization/urgent visit. DISCUSSION: Over 6 months of usual care among adults with epilepsy and anxiety or depression symptoms, there was no significant average improvement in quality of life or anxiety/depression, suggesting a need for interventions to enhance routine neurology care and achieve quality of life improvement for this group.

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.

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.

Challenging behaviour and epilepsy in patients with intellectual disability: frequency and mutual association.

Comorbid epilepsy and challenging behaviours is quiet common in patients with ID (intellectual disability). This study aims to determine the frequency and mutual association between epilepsy and challenging behaviours. In this cross-sectional analytical study, 252 patients were enrolled through convenient sampling technique. Comorbid epilepsy and CB (challenging behaviour) were seen in 111 (44.6%) and 116 (46.6%) patients, respectively. Epilepsy and severity of intellectual disability (ID) are statistically and significantly associated with challenging behaviour. This study concluded that comorbid epilepsy is more common among people with ID as compared to the general population. The clinical variables, i.e. comorbid epilepsy and severity of ID have statistically significant association with the CB.

Evaluation of the Effect of Parenting Style and Parental Mealtime Actions on the Eating Behavior of Children with Epilepsy.

BACKGROUND: Research on the interaction of parenting style, parents' mealtime behaviors, and children's eating behavior in the presence of chronic disease is limited. This study aimed to investigate the impact of parenting style and parental mealtime actions on the eating behavior of children with epilepsy. METHODS: Thirty-one children with epilepsy, thirty-one healthy children (aged 4-9 years), and their parents were included. The Multidimensional Assessment of Parenting Scale (MAPS), Parent Mealtime Action Scale, Children's Eating Behavior Questionnaire, and Healthy Eating Index (HEI)-2015 were applied. The MAPS, HEI-2015 scores, and body mass index for age Z scores were similar in both groups (p > 0.05). In the epilepsy group, the food approach behavior score was higher, and positive correlations were noted between broadband negative parenting and food approach behavior, and the HEI-2015 score and broadband positive parenting (p < 0.05). Regression analysis showed that broadband negative parenting and snack modeling increased the food approach behavior in the epilepsy group. Owing to the chronic disease, the effects of parent-child interaction on the child's eating behavior in the epilepsy group differed from those of healthy children reported in the literature.

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.

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.

Artificial intelligence: Can it help us better grasp the idea of epilepsy? An exploratory dialogue with ChatGPT and DALL·E 2.

BACKGROUND: The conceptual definition of epilepsy has been changing over decades and remains debatable. We assessed how artificial intelligence (AI) conceives epilepsy and its impact on a person's life through verbal and visual material. METHODS: We asked the Chat Generative Pre-Trained Transformer (ChatGPT, OpenAI) to define epilepsy and its impact. Prompts from ChatGPT were transferred to another AI tool DALL·E 2 (Open AI) to generate visual images based on verbal input. RESULTS: The ChatGPT definition on epilepsy relied on both its conceptual and practical definitions. It titled epilepsy to be "a neurological disorder characterized by recurring seizures" that has significant impact on patients' lives and is diagnosed after two or more unprovoked seizures or if there is a high risk of future seizures. ChatGPT presented nine issues - seizure-related injuries, limitations on daily activities, emotional and psychological impact, social stigma and isolation, educational and employment challenges, relationship and family dynamics, medication side effects, financial burden, and coexisting conditions - as major consequences of epilepsy. AI-generated images ranged from direct portrayals of these phenomena to abstract imagery but were mostly deprived of symbolic elements and visual metaphors. CONCLUSION: We showed that AI can identify and visually interpret the burden of epilepsy from medical, societal and economical perspectives. However, the imagery created is not figurative and does not follow allegorical narratives put forward by epilepsy specialists in similar studies. The ability of AI models to lead an in-depth discussion on epilepsy remains questionable and should be explored with more advanced AI tools.

Screening and treatment of anxiety symptoms within an interdisciplinary comprehensive epilepsy center.

Youth with epilepsy (YWE) are at elevated risk for anxiety, yet anxiety is often undetected and understudied in this population. Most research on anxiety in YWE is based on parent proxy-report and broad-band measures with limited sensitivity. The aim of the current study was to: 1) examine rates of anxiety symptoms in YWE using a diagnosis-specific, self-report measure of anxiety symptoms, 2) assess differences in anxiety symptoms by sociodemographic and medical variables, and 3) evaluate changes in anxiety symptoms following a brief behavioral health intervention delivered within an interdisciplinary epilepsy clinic visit. As part of routine clinical care, 317 YWE [Mage=13.4+2.5 years (range 7-19 years); 54% female; 84% White: Non-Hispanic] completed the Multidimensional Anxiety Scale for Children, self-report (MASC-10), with a subset completing the MASC-10 at a second timepoint (n=139). A retrospective chart review was completed and sociodemographic, medical variables and behavioral health interventions were collected. Thirty percent of YWE endorsed elevated anxiety symptoms, with higher rates in those who were younger. YWE who received a behavioral health intervention for anxiety (n=21) demonstrated greater decreases in anxiety symptoms from Time 1 to Time 2 compared to those who did not receive a behavioral intervention (n=108). The integration of psychologists into pediatric epilepsy clinics may have allowed for early identification of anxiety symptoms, as well behavioral interventions to address these symptoms, which has the potential to decrease the need for more intensive services.

Association between physical activity and psychosocial status in adults with epilepsy: Results from the 2022 National health Interview survey.

OBJECTIVE: The study aimed to investigate the association between physical activity and the four dimensions of psychosocial status in adults with epilepsy. METHODS: The data of individuals with epilepsy utilized in this cross-sectional study were derived from the 2022 National Health Interview Survey(NHIS). Physical activity was analyzed based on walking, moderate or vigorous intensity physical activity and the 2018 Physical Activity Guidelines (PAG) for Americans. The psychosocial status of the participants was assessed using self-report questionnaires that evaluated life satisfaction, symptoms of depression and anxiety, and social functioning. A multivariate ordinal regression model was employed to estimate odds ratios (ORs) and corresponding 95% confidence intervals (CIs) following adjustment for potential confounding factors. RESULTS: In total of 424 individuals with epilepsy(mean age:48.0 years; male: 40.6 %) were included in this study. About 39.9 % of the participants met the 2018 PAG for aerobic activity. After controlling for potential confounding factors, individuals who adhered to the 2018 PAG for aerobic activity were found to have a higher likelihood of reporting increased life satisfaction (OR, 0.39; 95 % CI: 0.21, 0.71), decreased symptoms of depression (OR, 0.53; 95 % CI: 0.30, 0.94), and improved social functioning (OR, 0.42; 95 % CI: 0.24, 0.74). However, no significant association was observed between physical activity and anxiety symptoms among individuals with epilepsy. CONCLUSIONS: This study emphasizes that moderate to vigorous physical activity enhances psychosocial health in individuals with epilepsy. Nevertheless, it is important to note that a causal relationship cannot be inferred from these findings, and further verification through randomized controlled trials is necessary.

Disability burden of epilepsy in Türkiye: How does it differ from other newly industrialized countries?

INTRODUCTION: Epilepsy accounts for a substantial part of the global burden of disability. This study aimed to investigate the employment history of people with epilepsy in Türkiye, evaluate the role of education level in employment and epilepsy burden, and compare epilepsy employment data in different societies according to sociodemographic index data. METHODS: This prospective study included 420 people 16-76 years of age who were diagnosed with epilepsy according to the criteria of the International League Against Epilepsy. Socioeconomic, clinical, and employment data were collected using a questionnaire in face-to-face interviews. RESULTS: The study sample was 52 % women, the mean age was 34.2 ± 12.7 years (range: 16-76 years), and the mean disease duration was 17.2 ± 12.6 years. Only 26.7 % (n = 112) of the participants were actively working, 38.8 % had never worked, and 64.5 % had changed jobs at least twice (mean 2.45 job changes). The unemployment rate among the study sample was 7 times higher than in the general population. Female gender, low self and parental education levels, high seizure frequency, and the use of multiple anti-seizure medications were significantly associated with lower employment. CONCLUSION: We determined that the employment rates and education levels of people with epilepsy in Türkiye are low, the unemployment rate is high, and the burden of epilepsy is higher when compared with other low-middle income and newly industrialized countries and national population data. Education and employment opportunities for people with epilepsy in Türkiye should be improved to reduce the burden of epilepsy-related disability and thereby increase quality of life, welfare, and psychosocial well-being in this group.

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.