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Objective: Contrary to patients, the psychological impact of functional seizures to caregivers has not been adequately investigated. This study aimed to evaluate the rates and determinants of depression and anxiety in caregivers of patients with functional seizures., Methods: Patients with functional seizures and their caregivers completed surveys about demographic, disease-related, and psychosocial characteristics. Rates and determinants of depression and anxiety were evaluated using the Beck Depression and Anxiety Inventory scores as dependent variables and patient and caregiver characteristics as independent variables., Results: Twenty-nine patients (76% female, mean age of 37 years) and their caregivers (59% female, mean age of 43 years) were recruited. Symptoms of anxiety and/or depression were present in 96% of patients (96% depression, 92% anxiety) and 59% of caregivers (52% depression, 50% anxiety). Specifically, 31% of caregivers manifested mild depression, 14% moderate depression, and 7% severe depression, whereas 48% were not depressed. Similarly, 14% of caregivers manifested mild anxiety, 29% moderate anxiety, and 7% severe anxiety, whereas 50% were not anxious. Patient and caregiver depression levels strongly correlated (r = .73, p < .0001). The presence of anxiety and depression in the caregiver was associated with male patient gender (p = .02), patient depression level (p = .002), the caregiver being a parent or sibling (p = .02), and caregiver burden (p = .0009)., Significance: Caregivers of patients with functional seizures experience high rates of anxiety and depression, explained by specific demographic and psychosocial factors that could act as intervention targets., (© 2023 International League Against Epilepsy.)

Background: Patients with psychogenic nonepileptic seizures (PNES) can be semiologically dichotomized into those with hyperkinetic and those with paucikinetic events. The objective of this study was to compare characteristics of patients with diverse phenomenology and their caregivers to evaluate for differences that could inform about disease nosology., Methods: Patients and caregivers monitored at the Epilepsy Monitoring Unit completed surveys about sociodemographic and disease characteristics, treatment and health care utilization, physical and psychosocial impact, and epilepsy knowledge. Patients were classified into hyperkinetic versus paucikinetic based on their recorded events. Comparison of the 2 populations was performed using Student t test for continuous variables and Fischer exact test for categorical variables., Results: Forty-three patients with Epilepsy Monitoring Unit confirmed PNES and 28 caregivers were enrolled. Patients with hyperkinetic events were more commonly non-White patients and necessitated greater caregiving time. Otherwise, no statistically significant differences were seen between the 2 semiologically diverse groups of patients and caregivers in their sociodemographic (age, sex, employment, income, marital, and education) and disease (age of onset, duration, seizures frequency) characteristics, treatment (number of antiseizure medications before diagnosis, side effects) and health care utilization (emergency room visits, hospitalizations, clinic visits), physical (injuries) and psychosocial (depression, anxiety, quality of life, stigma, burden) characteristics, nor in their knowledge about seizures., Conclusions: Hyperkinetic events were more frequently encountered in non-White patients and required more caregiving time. Further research is required to elucidate if phenomenological dichotomy of PNES can inform about their nosological basis, and if it can guide treatment and define prognosis., Competing Interests: The authors declare no conflict of interest., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Abstract: This study evaluated the rates of depression and anxiety and their determinants in adult persons with epilepsy and their caregivers. Both completed surveys about demographic, disease-related, and psychosocial characteristics. One hundred patients and caregivers participated. A mood disorder was present in 89% of patients and 56% of caregivers. In the univariate analysis, the presence of mood disorder in the patient was associated with being unmarried, unemployed, frequent hospitalizations, side effects from polypharmacy, patient stigma, patient quality of life, caregiver anxiety, and caregiver burden. In the multivariate analysis, medication side effects sustained as an important determinant. In the univariate analysis, the presence of mood disorder in the caregiver was associated with seizure frequency, patient anxiety, patient quality of life, caregiver stigma, and caregiver burden. In the multivariate analysis, patient anxiety level and caregiver burden sustained as important determinants. Adult persons with epilepsy and their caregivers experience high rates of mood disorders, explained by certain clinical factors., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

There is limited information on disparities of people with epilepsy (PWE) and, foremost, their caregivers. The objective of this study was to comprehensively compare between PWE and caregivers with low socioeconomic status (SES) and those with high SES for disparities in demographic and epilepsy characteristics, treatment and health care utilization, physical and psychosocial impact, and knowledge about epilepsy. PWE and caregivers completed surveys about the aforementioned outcomes during their epilepsy clinic visit or epilepsy monitoring unit admission. Associations were evaluated using SES as a binary independent variable and the patient and caregiver related outcomes as dependent variables. Thirty-eight patients with low SES and 88 patients with high SES were recruited. Patients with low SES were more commonly non-white, uninsured, unemployed, of lower educational attainment and living in larger households. They were more likely to visit the emergency room for their seizures, were more frequently on polypharmacy and experienced more AED adverse effects. They exhibited higher depression and anxiety levels and worse quality of life. Twenty-two caregivers with low SES and 66 caregivers of high SAS were recruited. Caregivers with low SES were more likely to be non-white and single. They manifested poorer knowledge about epilepsy. There are notable inequalities in demographic, treatment-related and health care utilization aspects of care of PWE, as well as in the psychosocial impact of their disease. Additional demographic and epilepsy knowledge-related disparities are recognized in caregivers of PWE. Identification of those disparities is a critical step in the creation of appropriate interventions to eliminate them.

Objective: There is scarce literature on stigma in families living with psychogenic nonepileptic seizures (PNES). Using a cohort of patients with epileptic seizures (ES) and their caregivers as controls, we aimed to quantify the level of patient and caregiver stigma in PNES and identify associations of patient and caregiver characteristics with it., Methods: Patients with PNES and ES and their caregivers completed surveys about demographic, clinical, and psychosocial characteristics. Multivariate regression analysis was used to identify correlates of patient and caregiver stigma., Results: Forty-three patients with PNES and 165 patients with ES were recruited. Compared with patients with ES, patients with PNES had shorter disease duration, higher seizure frequency, normal diagnostic data, poorer psychosocial health, and fewer antiseizure medications (ASMs). A total of 76.5% of patients with PNES and 59.5% of patients with ES felt stigmatized. Patient stigma level was higher in patients with PNES compared with those with ES, and it was negatively associated with patient quality of life (QOL). Additionally, 28 caregivers of patients with PNES and 99 caregivers of patients with ES were recruited. There were no significant demographic, caregiving, or psychosocial differences between the two caregiver cohorts. Seventy-two percent of caregivers of patients with PNES and 47% of caregivers of patients with ES felt stigmatized. Caregiver stigma level was also higher in caregivers of patients with PNES compared with caregivers of patients with ES, and it was negatively associated with patient QOL and positively associated with patient and caregiver anxiety., Conclusion: Compared with those with ES, patients and caregivers living with PNES experience stigma more frequently and to a higher extent. Patient QOL emerges as a consistent correlate of that stigma., Competing Interests: Declaration of competing interest None of the authors has any pertinent declarations of interest to disclose to this study. This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Objective: There is no information on disparities of patients with psychogenic nonepileptic seizures (PNES) and their caregivers. The objective of this exploratory study is to compare patients with PNES and caregivers with low socioeconomic status (SES) with those of high SES for disparities in healthcare use, seizures, medication adverse effects, psychosocial impact, and knowledge about epilepsy., Methods: Patients with PNES and caregivers completed surveys about the aforementioned outcomes during their Epilepsy Monitoring Unit (EMU) admission. Associations were evaluated using SES as a binary independent variable and the patient- and caregiver-related outcomes as dependent variables., Results: Forty-three patients and 28 caregivers were recruited. The majority of patients were on average 36 years old, single women, unemployed, with some college education. The majority had PNES for 8 years averaging 20 seizures per month and were maintained on ≥2 antiepileptic drugs (AEDs) prior to their EMU admission. Most caregivers were first-degree relatives with a mean age of 43 years, married employed women of higher educational attainment, typically cohabitating with the patients. Low SES patients showed poorer knowledge about epilepsy (p < 0.0001) and higher anxiety levels (p = 0.03). Conversely, high SES patients demonstrated poorer social functioning (p = 0.04). High SES caregivers showed higher caregiving burden (p = 0.01)., Conclusion: There are noteworthy disparities in patients with PNES of different SES and their caregivers. Identification of those disparities is a critical step in the creation of appropriate interventions to address them., Competing Interests: Declaration of competing interest None of the authors has any pertinent interest to disclose. This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Purpose: Little is known about the effect of psychogenic non epileptic seizures (PNES) to caregiver quality of life (QOL), particularly as it compares to epileptic seizures (ES). We sought to characterize this effect and identify its determinants., Methods: The study population comprised of 126 ES and 33 PNES patients who underwent video EEG monitoring along with 48 and 18 caregivers respectively who accompanied them to their investigations. Patients completed questionnaires providing demographic, disease-related, cognitive, psychiatric, sleep and QOL information on admission, prior to their diagnosis being clarified. Their caregivers completed questionnaires providing demographic, disease burden and generic QOL information. Paraclinical data were also gathered. Regression analysis was used to identify patient and caregiver related determinants of patient and caregiver QOL., Results: QOL scores were significantly worse for PNES than ES patients and were mainly linked to depression levels. PNES and ES caregivers had comparable demographic characteristics and QOL scores. ES caregiver QOL was better in employed caregivers with lower burden scores for the physical component summary (PCS) and worse in female caregivers of depressed patients with higher burden scores for the mental component summary (MCS). Caregiver burden score was the strongest correlate of PNES caregiver MCS QOL score., Conclusion: Caregiver QOL in PNES does not differ from caregiver QOL in ES, while patient QOL is worse in PNES. Caregiver burden emerges as a consistent correlate of caregiver QOL both in ES and PNES. These findings advocate for consideration of caregiver burden and QOL in PNES in clinical practice and for future research paradigms., (Copyright © 2013 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.)

Purpose: Epilepsy surgery has been shown to improve patient quality of life (QOL). Little is known about its effect on caregiver QOL., Methods: The study population comprised of 26 persons with epilepsy (PWE) who underwent long term video EEG monitoring at Massachusetts General Hospital for presurgical evaluation along with 16 caregivers. The PWE completed epilepsy directed QOL (QOLIE-31) and psychological (Beck depression-BDI and anxiety inventory-BAI) questionnaires before and after surgery. Their participating caregivers completed generic health related QOL (SF36v2) and disease burden (Zarit caregiver burden inventory-ZCBI) questionnaires before and after surgery. Demographic data for all participants and disease/surgery related data for the PWE were collected. Statistical analysis was performed to compare PWE and caregiver QOL before and after surgery., Results: Mean patient age was 37 years. Most (77%) suffered from symptomatic partial epilepsy for approximately 18 years prior to surgery, averaging 4 seizures per month and 2.2 antiepileptic drugs (AEDs). 78% of them underwent an anterior temporal lobectomy and the rest extra-temporal resections. On follow up at approximately 9 months, 69% had a surgical outcome of Engel class I, 23% of class II and 8% class IV. Postoperatively, the PWE remained on average on 1.9 AEDs. There was a statistically significant improvement for both the aggregate QOLIE-31 score and all its subscales (except for medication effects) as well as the BAI scores. 96% of the PWE felt that the decision to go through surgery was worthwhile. Mean caregivers age was 47 years. Half of them were spouses to the PWE and the majority of the rest their parents. 50% of them stated that their overall time devoted to patient's care decreased after surgery and 50% that it remained unchanged. The mental component scale (SF36v2, MCS) of caregiver QOL showed statistically significant improvement. ZCBI score and the physical component scale of their QOL (SF36v2, PCS) did not significantly vary before and after surgery. 75% of caregivers deemed their QOL better post surgery vs 19% similar. 94% of the caregivers felt that the decision to go through surgery was worthwhile., Conclusions: Successful epilepsy surgery has a positive impact not only to patient QOL but also to their caregiver. To the best of our knowledge, this is the first pilot study to systematically address the impact of epilepsy surgery on caregivers providing additional support to epilepsy surgery as the optimal treatment modality in carefully selected patients. These findings call for further investigation on the caregiver quality of life in epilepsy and for its inclusion in the treatment plan and quality indicators for epilepsy surgery., (Copyright © 2013 Elsevier B.V. All rights reserved.)