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Objectives: People with epilepsy (PWE) not only suffer from seizures but also from various psycho-social issues containing facets such as social functioning, anxiety, depression or stigmatization, and consequently quality of life. (1) Assessing reliable change of these issues is crucial to evaluate their course and potential treatment effects. As most psycho-social self-report questionnaires have been validated in separate samples, their clinical-socio-demographic differences may limit the comparability and generalizability of the scales' internal consistency, which is important for the reliable change index (RCI). Using a co-normalized approach, we provide the internal consistency and RCIs for a large set of questionnaires targeting quality of life (QOLIE-31-P), depressive symptoms (NDDI-E), anxiety (GAD-7), seizure severity (LSSS), subjective antiseizure medication adverse events (LAEP), stigma, epilepsy-related fear, and restrictions in daily life (PESOS), and subjective cognition (FLei). As for some German versions of these measures, psychometric data is still missing, we also add important information for the German language area. (2) In addition, knowledge about intercorrelations of these constructs is needed to shape questionnaire usage and treatment approaches. We thus investigate associations of these scales and compare weighted and unweighted subscales of the QOLIE-31-P., Methods: In our prospective study, 202 adult in-patients of the Epilepsy-Center Berlin-Brandenburg with a reliable diagnosis of epilepsy filled out a set of self-report questionnaires between 03/2018 and 03/2021. We calculated Cronbach's α, RCIs, and bivariate intercorrelations and compared the respective correlations of weighted and unweighted scales of the QOLIE-31-P., Results: For most of the scales, good to excellent internal consistency was identified. Furthermore, we found intercorrelations in the expected directions with strong links between scales assessing similar constructs (e.g., QOLIE-31-P Cognition and FLei), but weak relationships between measures for different constructs (e.g., QOLIE-31-P Seizure worry and FLei). The QOLIE-31-P Total score was highly correlated with most of the other scales. Some differences regarding their correlational patterns for weighted and unweighted QOLIE-31-P scales were identified., Conclusions: Psycho-social constructs share a large amount of common variance, but still can be separated from each other. The QOLIE-31-P Total score represents an adequate measure of general psycho-social burden., Competing Interests: Declaration of competing interest M.H. has received speaker honoraria and/or consultancy fees from Angelini, Bial, Desitin, Eisai, Jazz Pharma and UCB within the last 3 years, all unrelated to the contents of this manuscript. None of the other authors has any conflict of interest to disclose., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Objective: Many people with epilepsy report subjective cognitive impairment (SCI), i.e., problems with memory, attention, or executive functions, reducing quality of life. Nevertheless, overlap with objective cognitive impairment (OCI) is often weak. One reason may be a domain-specific mismatch between subjective reports and objective tests. We aimed to evaluate relations between SCI and OCI of corresponding domains and to assess whether these differ between persons who over- or underestimate their performance., Methods: In this prospective, cross-sectional sample of 104 adult inpatients with epilepsy, we performed multiple regression analyses predicting SCI in the domains attention, memory, and executive functions. We tested relationships with measures of psychomotor speed, short-term memory, verbal learning, verbal delayed recall, and word fluency while controlling for age, sex, seizure frequency, structural lesions, mono- versus polytherapy and adverse events of antiseizure medication (ASM), depressive and anxiety symptoms, level of education, and employment status. Furthermore, we tested whether these relationships differed between realistic raters and over- and underestimators., Results: We found domain-specific relations for attention and executive functions for the full sample, explaining a small proportion of variance of SCI (general dominance index = .03 and .004), whereas ASM adverse events and psychological variables were more important predictors. When dividing the sample according to the concordance of SCI and OCI, we found high frequencies of both over- (23%-46%) and underestimation (31%-35%) depending on the domain. The explanatory power of OCI for SCI was stronger within the subgroups compared to the full sample, suggesting nonlinear relationships and different underlying mechanisms for realistic raters, underestimators, and overestimators., Significance: Domain-specific SCI and OCI are related, and both should be assessed with standardized instruments. These relationships differ between over- and underestimators as well as realistic raters. Based on the concordance of self-ratings and objective measures, tailored counseling and treatment should be offered., (© 2023 The Authors. Epilepsia published by Wiley Periodicals LLC on behalf of International League Against Epilepsy.)

Objective: This prospective study aimed at comparing quality of life (QoL) and psycho-socio-clinical profiles between patients with epilepsy, psychogenic nonepileptic seizures (PNES), and syncope. We also intended to identify predictors of QoL in these three seizure disorders., Methods: A total of 245 inpatients (epilepsy n = 182, PNES n = 50, syncope n = 13) from a tertiary epilepsy clinic were included. Information on QoL as well as on psychological, sociodemographic, and clinical profiles was retrieved using questionnaires and medical records. Group comparisons on QoL and psycho-socio-clinical profiles were performed via analyses of variance, chi-square tests, and related post hoc tests. Predictors of QoL in epilepsy and PNES were determined using general linear modeling, which was not possible for syncope due to a small sample size., Results: Patients with epilepsy, PNES, and syncope reported levels of QoL impairment that did not differ significantly between groups (p = 0.266). However, there were significant group differences regarding sex distribution (p < 0.001), seizure disorder duration (p = 0.004), seizure frequency (p = 0.019), current treatment with antiseizure medications (ASM) (p < 0.001), number of current ASM (p < 0.001), and adverse ASM events (p = 0.019). More depressive symptoms (p = 0.001), more adverse ASM events (p = 0.036), and unemployment (p = 0.046) (in this order) independently predicted a diminished QoL in epilepsy. For PNES, more depressive symptoms were the only independent predictor of lower QoL (p = 0.029)., Conclusions: Patients with epilepsy, PNES, and syncope experience similarly diminished QoL and show a general psycho-socio-clinical burden with a specific pattern for each seizure disorder diagnosis. Although clinical aspects play an undisputed role for QoL in epilepsy, the psychosocial aspects and consequences are equally, or for PNES probably even more, meaningful. A comprehensive approach to research and treatment of seizure disorders seems mandatory to increase QoL for these patients. More research on QoL in syncope is needed., Competing Interests: Declaration of Competing Interest MH reports personal fees as speaker and consultant within the last 3 years from Angelini/Arvelle, Bial, Desitin, Eisai, GW Pharma, UCB, and Zogenix outside the submitted work. The remaining authors have no conflicts of interest., (Copyright © 2022 Elsevier Inc. All rights reserved.)

Purpose: Epilepsy is one of the most common neurological disorders with high costs for the healthcare systems and great suffering for patients. Beyond seizures, psychosocial comorbidities can have detrimental effects on the well-being of people with epilepsy. One source of social stress and reduced quality of life is epilepsy-related stigma that often occurs, e.g., due to public misconceptions or myths. Stigma has individual biological, psychological and social correlates. Moreover, environmental factors like living in remote areas are associated with stigma. However, little is known about the link between the social structure of the residence and stigma in epilepsy. Thus, we investigated the association between the structural socioeconomic status (SES) and perceived stigma in an urban epilepsy population., Methods: This prospective, cross-sectional study examined 226 adult in-patients with epilepsy from Berlin. Multiple regression analyses were performed to check the relationship between structural SES and stigma controlling for individual-level demographic, clinical, psychological and social factors. Continuous social indices (SI) of the districts and neighborhoods ("SI district" and "SI neighborhood") of Berlin were used to measure different levels of structural SES. Non-linear relationships are tested by grouping the SI in quartiles., Results: Both indicators of structural SES were independently linked to stigma ( p = 0.002). For "SI district", we identified a non-linear relationship with patients from the most deprived quartile feeling less stigmatized compared to those in the second ( p < 0.001) or least deprived quartile ( p = 0.009). Furthermore, more restrictions of daily life ( p < 0.001), unfavorable income ( p = 0.009) and seizure freedom in the past 6 months ( p = 0.05) were related to increased stigma. A lower "SI neighborhood" was associated with higher stigma ( p = 0.002)., Conclusion: Strategies to reduce epilepsy-related stigma need to consider the sociostructural living environment on different regional levels. Unfavorable relations with the immediate living environment may be directly targeted in patient-centered interventions. Non-linear associations with the structural SES of broader regional levels should be considered in public education programs. Further research is needed to examine possible underlying mechanisms and gain insight into the generalizability of our findings to other populations., Competing Interests: Author MH received speaker's honoraria and/or consultancy fees from Angelini, Bial, Desitin, Eisai, GW Pharmaceuticals, Neuraxpharm, UCB, and Zogenix. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 Hohmann, Berger, Kastell and Holtkamp.)

Purpose: Juvenile myoclonic epilepsy (JME) is a well-defined subsyndrome of idiopathic generalized/genetic epilepsy. It is allegedly related to specific personality characteristics and has been associated with unfavorable social outcome. We aimed to analyze psychosocial outcome in patients with JME. To delineate consequences of the chronic seizure disorder from possible neurobiologic contributions being inherent to the condition itself, we compared social outcome in JME subjects with that of age- and sex-matched control patients with absence epilepsy (AE)., Methods: Patients with an epilepsy course of at least 20 years were included. All JME and AE patients (n = 41 in each group) answered a structured questionnaire asking about seizures, treatment, and psychosocial variables. In addition, patients with JME were assessed with the Quality of Life in Epilepsy Inventory 31 (QOLIE-31)., Results: In JME, 46.3 years (20-69) after onset of epilepsy, the overall psychosocial long-term outcome was favorable (80.5% of patients had never been unemployed for more than 1 year, 90.2% were well integrated into social context). Quality of life in all inquired subdomains revealed high scores. Compared with AE controls, JME patients did not perform worse regarding psychosocial outcome; rate of university access and degrees in JME patients was even higher (70% vs. 34%, p = 0.001). JME patients showed a high level of quality of life, and current or previous psychiatric comorbidity was associated significantly with lower overall quality of life scores (p = 0.02)., Significance: Our long-term study on JME patients demonstrated favorable psychosocial outcome that contrasted previous findings. This is the first study to compare social outcome in JME with another genetically determined form of epilepsy. Similar outcomes in JME and AE patients argue against specific neurobiologic alterations in JME that may predispose to social deficits. In JME, reduced quality of life seems to be associated with psychiatric comorbidity., (Wiley Periodicals, Inc. © 2014 International League Against Epilepsy.)

Prognosis of patients with ischemic stroke requiring mechanical ventilation (MV) has been reported to be poor. However, longterm survival and functional outcome have scarcely been studied and nothing is known about the prevalence of cognitive impairment or depression in survivors and their quality of life (QoL). We identified all patients treated for acute ischemic stroke on a Neurological Intensive Care Unit during 3.5 years who required MV for more than 24 hours. Early mortality rate at 2 months and survival rates at 1 and 2 years were determined. Survivors were examined for functional outcome (modified Rankin Scale (mRS), Barthel Index), cognitive impairment (Mini Mental State Examination (MMSE)), depression (Beck Depression Inventory, BDI) and QoL (Short Form-36). Clinical characteristics on admission were analyzed for prognostic significance. Of 101 consecutive patients, 44% died within 60 days. Survival rates at 1 and 2 years were 40% and 33%, respectively. Age > 60 years (p = 0.002) and Glasgow Coma Scale score < 10 on admission (p = 0.002) were independent predictors of early and late mortality. History of myocardial infarction (p = 0.007) independently predicted late mortality at 2 years. Of 33 surviving patients, nine (27%) had a good functional outcome (mRS 0-2). Of 27 survivors who could be interviewed, 17 (63%) had no cognitive impairment (MMSE > 24) and 20 (74%) did not suffer from relevant depression (BDI < 19). In conclusion, longer-term survival of patients with ischemic stroke requiring MV was 33% and every fourth survivor resumed an independent life without dementia or depression. Older patients comatose on admission and with concomitant cardiovascular disease had the lowest probability of a favorable outcome.

Background: Depression is common among persons with epilepsy (PwE), affecting roughly one in three individuals, and its presence is associated with personal suffering, impaired quality of life, and worse prognosis. Despite the availability of effective treatments, depression is often overlooked and treated inadequately in PwE, in part because of assumed concerns over drug interactions or proconvulsant effects of antidepressants. Internet-administered psychological interventions might complement antidepressant medication or psychotherapy, and preliminary evidence suggests that they can be effective. However, no trial has yet examined whether an Internet intervention designed to meet the needs of PwE can achieve sustained reductions in depression and related symptoms, such as anxiety, when offered as adjunct to treatment as usual. Methods/Design: This randomized controlled trial will include 200 participants with epilepsy and a current depressive disorder, along with currently at least moderately elevated depression (Patient Health Questionnaire (PHQ-9) sum score of at least 10). Patients will be recruited via epilepsy treatment centers and other sources, including Internet forums, newspaper articles, flyers, posters, and media articles or advertisements, in German-speaking countries. Main inclusion criteria are: self-reported diagnosis of epilepsy and a depressive disorder, as assessed with a phone-administered structured diagnostic interview, none or stable antidepressant medication, no current psychotherapy, no other major psychiatric disorder, no acute suicidality. Participants will be randomly assigned to either (1) a care-as-usual/waitlist (CAU/WL) control group, in which they receive CAU and are given access to the Internet intervention after 3 months (that is, a CAU/WL control group), or (2) a treatment group that may also use CAU and in addition immediately receives six-month access to the novel, Internet-administered intervention. The primary outcome measure is the PHQ-9, collected at three months post-baseline; secondary measures include self-reported anxiety, work and social adjustment, epilepsy symptoms (including seizure frequency and severity), medication adherence, potential negative treatment effects and health-related quality of life. Measurements are collected online at pre-treatment (T0), three months (T1), six months (T2), and nine months (T3). Discussion: Results of this trial are expected to extend the body of knowledge with regard to effective and efficient treatment options for PwE who experience elevated depression and anxiety. [ABSTRACT FROM AUTHOR]

Purpose: Anxiety and depression are frequent comorbidities in people with epilepsy (PWE), but possible gender differences are often neglected. The aim of the present study was to analyze if men and women with epilepsy differ with regard to anxiety and depressive symptoms and to identify possible predictors.Methods: Adult consecutive PWE (N=302; 53% women) completed self-report questionnaires, including the depression module of the Patient Health Questionnaire (PHQ-9), the anxiety module of the Hospital Anxiety and Depression Scale (HADS-A) and the subscales "medication effects" and "seizure worry" of the Patient-weighted Quality of Life in Epilepsy Inventory-31-P (QOLIE-31-P).Results: There was no gender difference in extent of anxiety (p=.532), which was mainly due to higher anxiety levels in men compared to the general population. The gender difference in depressive symptoms was significant (p=.009), with female patients being more affected. The most important predictors for anxiety and depressive symptoms were detrimental effects of medication (QOL medication effects) and of seizure worry (QOL seizure worry). Moreover, these predictors were more closely associated with anxiety and depressive symptoms in men.Conclusion: Future intervention studies could show whether providing more information about the illness and medication effects may improve anxiety and depression. Our results suggest that such interventions should be tailored to the different needs of men and women. [ABSTRACT FROM AUTHOR]