Predictors of objective treatment adherence in adolescents with epilepsy: The important role of motivation.

OBJECTIVE: Adolescents with epilepsy are at heightened risk for suboptimal anti-seizure medication (ASM) adherence; however, there is a paucity of adherence interventions for this age group. The current study aimed to identify a comprehensive and novel set of predictors of objective, electronically-monitored ASM adherence in adolescents with epilepsy. METHODS: Participants included 104 adolescents (13-17 years old; M = 15.36 ± 1.40), diagnosed with epilepsy and their caregivers. Cross-sectional data were collected from adolescents, caregivers, healthcare providers, and medical chart reviews, including demographics (i.e., age, race/ethnicity, sex, insurance status), the COVID-19 pandemic (i.e., participation before versus during), seizure characteristics (i.e., presence and severity), ASM side effects (Pediatric Epilepsy Side Effects Questionnaire), adherence motivation (1-item 6-point Likert scale item), and adherence barriers (Pediatric Epilepsy Medication Self-Management Questionnaire). Electronically-monitored adherence data was collected via the AdhereTechTM pill bottle or the Vaica SimpleMedTM pillbox over 30 days. RESULTS: Adolescents demonstrated suboptimal adherence at 78 ± 31.6%, despite high ASM adherence motivation (M = 4.43 ± .94) and minimal adherence barriers (M = 35.64 ± 3.78). Hierarchical multiple regression, which included non-modifiable sociodemographic and medical variables (Block 1) and behaviorally modifiable psychosocial variables (Block 2) was significant, F(12,87) = 3.69, p < .001. Specifically, having private insurance (versus Medicaid or public insurance; t = -2.11, p = .038) and higher adherence motivation (t = 2.91, p = .005) predicted higher objective ASM adherence. CONCLUSION: Routine assessment of adherence predictors is vital for the promotion of adherence among adolescents with epilepsy. Adolescent adherence motivation may be an important element of multi-component interventions focused on improving ASM adherence in adolescents with epilepsy.

COVID-19 vaccination status and related process of care outcomes among U.S. adults with active epilepsy-National Health Interview Survey, United States, 2021.

Growing research has examined the effects of the COVID-19 pandemic on people with epilepsy. There are no published national estimates of COVID-19 vaccination status among U.S. adults with active epilepsy. The purpose of this study is to use 2021 National Health Interview Survey (NHIS) data to examine select COVID-19-related outcomes by epilepsy status in a nationally representative sample of US adults. The study sample met the criteria for operationalization of epilepsy status (i.e., active epilepsy vs. no epilepsy history) and select questions related to COVID-19 testing, vaccination, delays in care, or experience with virtual care during the COVID-19 pandemic. All analyses accounted for the NHIS complex sample design and response sampling weights. Our study found that in 2021 receipt of one COVID-19 vaccination among U.S. adults with active epilepsy was generally similar to that among adults without a history of epilepsy. By age, adults aged 18-44 years with active epilepsy (27.0%) were significantly less likely to have reported receiving two COVID-19 vaccinations compared with their peers with no epilepsy history (39.1%). Compared to adults with no epilepsy history, adults with active epilepsy reported similar experiences and outcomes regarding COVID-19 testing and obtaining health care during the COVID-19 pandemic. This study provides baseline estimates of select COVID-19 outcomes among US adults with active epilepsy to guide interventions and additional studies.

On-scene time delays for epileptic seizures in emergencies during a social pandemic: A population-based study.

OBJECTIVES: The on-scene time of Emergency Medical Services (EMS), including time for hospital selection, is critical for people in an emergency. However, the outbreak of the novel coronavirus disease 2019 (COVID-19) led to longer delays in providing immediate care for individuals with non-COVID-19-related emergencies, such as epileptic seizures. This study aimed to examine factors associated with on-scene time delays for people with epilepsy (PWE) with seizures needing immediate amelioration. MATERIALS & METHODS: We conducted a population-based retrospective cohort study for PWE transported by EMS between 2016 and 2021. We used data from the Hiroshima City Fire Service Bureau database, divided into three study periods: "Pre period", the period before the COVID pandemic (2016-2019); "Early period", the early period of the COVID pandemic (2020); and "Middle period", the middle period of the COVID pandemic (2021). We performed linear regression modeling to identify factors associated with changes in EMS on-scene time for PWE during each period. In addition, we estimated the rate of total EMS call volume required to maintain the same on-scene time for PWE transported by EMS during the pandemic expansion. RESULTS: Among 2,205 PWE transported by EMS, significant differences in mean age and prevalence of impaired consciousness were found between pandemic periods. Total EMS call volume per month for all causes during the same month <5,000 (-0.55 min, 95% confidence interval [CI] -1.02 - -0.08, p = 0.022) and transport during the Early period (-1.88 min, 95%CI -2.75 - -1.00, p < 0.001) decreased on-scene time, whereas transport during the Middle period (1.58 min, 95%CI 0.70 - 2.46, p < 0.001) increased on-scene time for PWE transported by EMS. The rate of total EMS call volume was estimated as 0.81 (95%CI -0.04 - 1.07) during the expansion phase of the pandemic to maintain the same degree of on-scene time for PWE transported by EMS before the pandemic. CONCLUSIONS: On-scene time delays on PWE in critical care settings were observed during the Middle period. When the pandemic expanded, the EMS system required resource allocation to maintain EMS for time-sensitive illnesses such as epileptic seizures. Timely system changes are critical to meet dramatic social changes.

Case definitions for onchocerciasis-associated epilepsy and nodding syndrome: A focused review.

Onchocerciasis-associated epilepsy (OAE) is an important but neglected public health problem in onchocerciasis-endemic areas with insufficient or inadequate onchocerciasis control. Hence, there is a need for an internationally accepted, easy-to-use epidemiological case definition of OAE to identify areas of high Onchocerca volvulus transmission and disease burden requiring treatment and prevention interventions. By including OAE as a manifestation of onchocerciasis, we will considerably improve the accuracy of the overall onchocerciasis disease burden, which is currently underestimated. Hopefully, this will lead to increased interest and funding for onchocerciasis research and control interventions, notably the implementation of more effective elimination measures and treatment and support for affected individuals and their families.

COVID-19 vaccination uptake in people with epilepsy in wales.

PURPOSE: People with epilepsy (PWE) are at increased risk of severe COVID-19. Assessing COVID-19 vaccine uptake is therefore important. We compared COVID-19 vaccination uptake for PWE in Wales with a matched control cohort. METHODS: We performed a retrospective, population, cohort study using linked, anonymised, Welsh electronic health records within the Secure Anonymised Information Linkage (SAIL) Databank (Welsh population=3.1 million).We identified PWE in Wales between 1st March 2020 and 31st December 2021 and created a control cohort using exact 5:1 matching (sex, age and socioeconomic status). We recorded 1st, 2nd and booster COVID-19 vaccinations. RESULTS: There were 25,404 adults with epilepsy (127,020 controls). 23,454 (92.3%) had a first vaccination, 22,826 (89.9%) a second, and 17,797 (70.1%) a booster. Comparative figures for controls were: 112,334 (87.8%), 109,057 (85.2%) and 79,980 (62.4%).PWE had higher vaccination rates in all age, sex and socioeconomic subgroups apart from booster uptake in older subgroups. Vaccination rates were higher in older subgroups, women and less deprived areas for both cohorts. People with intellectual disability and epilepsy had higher vaccination rates when compared with controls with intellectual disability. CONCLUSIONS: COVID-19 vaccination uptake for PWE in Wales was higher than that for a matched control group.

Living with epilepsy during COVID-19 pandemic restrictions: A longitudinal perspective.

The purpose of our study was to explore how people with epilepsy fared during two of the most stringent 4-month society-wide COVID-19-related pandemic restrictions in Ireland, in 2020 and one year later in 2021. This was in the context of their seizure control, lifestyle factors, and access to epilepsy-related healthcare services. A 14-part questionnaire was administered to adults with epilepsy during virtual specialist epilepsy clinics in a University Hospital in Dublin, Ireland at the end of the two lockdowns. People with epilepsy were questioned on their epilepsy control, lifestyle factors, and quality of epilepsy-related medical care, compared to pre-COVID times. The study sample consisted of two separate cohorts of those diagnosed with epilepsy (100 (51.8%) in 2020, and 93 (48.2%) in 2021, with similar baseline characteristics. There was no significant change in seizure control or lifestyle factors from 2020 to 2021, except for deterioration in anti-seizure medication (ASM) adherence in 2021 compared to 2020 (p = 0.028). There was no correlation between ASM adherence and other lifestyle factors. Over the two years, poor seizure control was significantly associated with poor sleep (p < 0.001) and average seizure frequency in a month (p = 0.007). We concluded that there was no significant difference between seizure control or lifestyle factors between the two most stringent lockdowns in Ireland, in 2020 and 2021. Furthermore, people with epilepsy reported that throughout the lockdowns access to services was well maintained, and they felt well supported by their services. Contrary to the popular opinion that COVID lockdowns greatly affected patients with chronic diseases, we found that those with epilepsy attending our service remained largely stable, optimistic, and healthy during this time.

[Impact of COVID-19 on some neurological and psychological features in epilepsy]. / Vliyanie COVID-19 na nevrologicheskie i psikhicheskie proyavleniya epilepsii.

The new coronavirus infection spread around the world in a very short time and turned into a pandemic with a wave-like flow for more than two years. COVID-19infection affects selectively various organs and systems, including the nervous system; neurological manifestations have been reported, including anosmia, encephalopathy, stroke, epileptogenic disorders, which necessitates studies of the course of brain diseases, among which epilepsy occupies a significant place.

Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic.

INTRODUCTION: Caregivers of adults with epilepsy face unique challenges, yet most studies focus on the impact of epilepsy on those living with the condition, rather than the impact on caregivers. Our objective was to evaluate whether caregivers' pandemic-related changes and experiences - namely those related to their health, healthcare access, and well-being - were associated with their caregiving burden. METHODS: Caregivers of adults with epilepsy (n = 261) were recruited through Qualtrics Panels to participate in an online survey examining health, well-being, COVID-19 experiences, and caregiver burden from October-December, 2020. The burden was measured using the Zarit 12-item measure; the clinically significant burden was defined as a score greater than 16. Adjustments were made to account for burden scores related to exposures of interest. Chi-square tests, t-tests, and generalized linear regression models were used to compare cross-sectional associations between COVID-19 experiences and burden. RESULTS: Over half (57.9%) of caregivers had clinically significant caregiver burden. Most reported increased anxiety (65%), stress (64%), and sense of social isolation (58%) during the pandemic. Many caregivers reported that their sense of control over their life (44%) and their use of healthcare changed (88%) due to COVID-19. In adjusted models, caregivers who reported increased anger, increased anxiety, decreased sense of control, or changes in healthcare utilization during COVID-19 had about twice the odds of having clinically significant caregiver burden compared to caregivers who did not report changes. DISCUSSION: Changes experienced by caregivers of adults with epilepsy during the pandemic were strongly associated with clinically significant levels of caregiver burden. These findings demonstrate the link between mass-level events, such as a pandemic, the burden caregivers of adults with epilepsy may carry, and subsequent psychological outcomes. CONCLUSION: Caregivers of adults with epilepsy may need support to reduce the negative impact of COVID-19-related experiences and should be connected to healthcare and resources that can help alleviate their burden.

Adaptive behaviour in children exposed to topiramate in the womb: An observational cohort study.

OBJECTIVE: Many women with epilepsy need to continue anti-seizure medications (ASMs) throughout pregnancy. The current study investigated adaptive behaviour outcomes in children exposed to topiramate in the womb. METHOD: An observational, cross-sectional study was designed, recruiting mother-child-pairs from the UK Epilepsy and Pregnancy Register (UKEPR). Health, developmental histories and Vineland Adaptive Behaviour Scale-Third Edition (VABS-III) assessments were administered via telephone by a blinded researcher, supplemented with prospectively collected pregnancy and medication information. Topiramate monotherapy exposed children were compared to VABS-III normative data as recruitment was disrupted by the COVID-19 pandemic. RESULTS: Thirty-four women with epilepsy from 135 (25%) initially agreed to participate in the study, of whom 26 women completed telephone interviews about their children (n = 28). Children ranged from 2.5 to 17 years of age at the time of assessment. Six topiramate-exposed children were born small for gestational age, and there were significant associations between birthweight, dose and VABS-III scores. Significantly lower scores were observed in topiramate-exposed children (n = 21) with a significant dose-response relationship established after adjustment for parental educational level. Daily mean dosage was 280.21 mg, with high dosages of topiramate associated with a 12-point reduction in VABS-III scores. Additionally, four topiramate-exposed children (19.05%) had diagnoses of Autism Spectrum Disorder, which was significantly higher than UK prevalence rates (1.1%). CONCLUSIONS: The findings of poorer adaptive behaviour, higher incidence of ASD and associations with birth weight are of concern and require further validation and replication using larger prospectively-recruited samples and comparator cohorts. Implications for research and clinical practice are discussed.

"Untold Distress" - How did the COVID-19 pandemic affect those who had previously experienced an epilepsy-related bereavement?

PURPOSE: This study explores the impact of the COVID-19 pandemic and lockdown on people with lived experience of sudden bereavement as a consequence of an epilepsy-related death. METHOD: We developed an online survey with fixed choice and open-ended response formats to collect data on grief symptoms and well-being during the pandemic. A total of 275 people bereaved by epilepsy-related deaths between 1980-2020 participated in this study: with 79 participants providing free-text responses for inductive thematic analysis. RESULTS: In total, 84% of participants reported a bereavement following a sudden death of a person aged under 40, with 22% aged 19 and under. The majority (77% of participants) reported they had been thinking more about the person who died compared to before the COVID-19 outbreak and 54% had experienced more distressing flashbacks to the time of death. Additionally, 61% reported more difficulties falling asleep and staying asleep and 88% of participants reported that the outbreak and response measures had negatively impacted upon their mental health. Medication was being taken for a diagnosed mental health condition by 33% of participants at the time of the study. We categorized these negative experiences during COVID in to four main-themes - 'Family', 'Lifestyle', 'Personal Well-being' and 'Health Services and Shielding Populations'. The 'Personal Well-being' theme was inextricably linked to grief symptoms including 'reflection on the death', 're-exposure to feeling', 'grief', 'salience of sudden deaths in the media' and 'inability to commemorate anniversaries and rituals'. These findings were consistent for bereaved people irrespective of the recency of the death. CONCLUSION: This study highlights the impact of the disruption caused by the pandemic on the grief-management of those bereaved by epilepsy-related death. Grief is not static and its management is connected to the psychosocial and formal support structures that were disrupted during the pandemic. The removal of these supports had an adverse effect upon the mental health and well-being of many bereaved. There is an urgent need for a system-wide transformation of epilepsy and mental health services to be inclusive of the needs and experiences of people impacted by sudden deaths in epilepsy and the contribution of the specialist service developed by families and clinicians to meet this gap.

Immediate and 6-month seizure outcomes following first and second SARS-CoV2 mRNA vaccinations: A multicenter study with a nationwide survey.

OBJECTIVE: This study aimed to identify seizure outcomes in people with epilepsy (PWE) following severe acute respiratory syndrome coronavirus 2 (SARS-CoV2) messenger RNA vaccination. METHODS: We examined PWE (n = 332, age ≥ 14 years) treated in four tertiary hospitals between 2021 and 2022 to assess the incidence of seizure worsening following vaccination using closed questions. We identified the clinical factors associated with worsening and 6-month vaccination outcomes. We also conducted a nationwide survey on self-reported seizure worsening using open questions, to which 261 general practitioners from 99 institutes contributed. RESULTS: Of the 282 PWE vaccinated in the four hospitals, 16 (5.7%) exhibited seizure worsening; most of them emerged within 48 h of vaccination and were not sustained. Thus, all PWE were at baseline condition 6 months after their vaccination. PWE with seizure worsening were more significantly associated with focal impaired awareness seizures (p < 0.001), high seizure frequency (p = 0.025), and drug-resistant epilepsy (p = 0.007) at baseline compared to PWE without worsening. Multivariate logistic regression analysis revealed that focal impaired awareness seizures were independently associated with worsening (odds ratio, 7.0; 95% confidence interval, 1.50-32.77). A nationwide survey of 5156 PWE data (real-world data) confirmed an extremely low incidence rate of self-reported seizure worsening (0.43%). SIGNIFICANCE: Some PWE, particularly refractory focal epilepsy, exhibit seizure worsening. However, the worsening events were infrequent, non-sustainable, and probably under-reported by PWE, suggesting that there is little evidence that worsening seizures discourage current and future vaccinations.

INCIDENCE OF ACUTE SYMPTOMATIC SEIZURES IN PATIENTS WITH COVID-19: A SINGLE-CENTER STUDY.

The most common neurological symptoms in patients with SARS-CoV-2 infection are headache, myalgia, encephalopathy, dizziness, dysgeusia and anosmia, making more than 90 percent of neurological manifestations of COVID-19. Other neurological manifestations such as stroke, movement disorder symptoms or epileptic seizures are rare but rather devastating, with possible lethal outcome. The primary aim of this study was to estimate the prevalence of acute symptomatic seizures among COVID-19 patients, while secondary aim was to determine their possible etiology. Out of 5382 patients with COVID-19 admitted to Dubrava University Hospital from November 1, 2020 until June 1, 2021, 38 (seizure rate 0.7%) of them had acute symptomatic seizures. Of these 38 patients, 29 (76.3%) had new-onset epileptic seizures and nine (23.7%) patients with previous epilepsy history had breakthrough seizures during COVID-19. Although acute symptomatic seizures are an infrequent complication of COVID-19, seizure risk must be considered in these patients, particularly in the group of patients with a severe course of the disease. Accumulation of proinflammatory cytokines may contribute to the occurrence of seizures in patients with COVID-19, but seizures may also be secondary to primary brain pathology related to COVID-19, such as stroke or encephalitis.

COVID-19 vaccination-related exacerbation of seizures in persons with epilepsy.

Although vaccines are generally safe in persons with epilepsy (PWE), seizures can be associated with vaccination, including COVID-19. This study assessed the occurrence of COVID-19 vaccination-related seizure exacerbations in PWE. Adult PWE who had received a COVID-19 vaccine were consecutively recruited at a tertiary epilepsy clinic between June 2021 and April 2022. Patient demographics, including epilepsy history, vaccination details, and reported adverse effects were recorded. Seizure exacerbation, defined as occurring within one week of vaccination, was assessed. Five hundred and thirty PWE received the COVID-19 vaccine. 75 % received the Comirnaty (Pfizer) vaccine as their initial dose. Most patients (72 %) were taking ≥ 2 antiseizure medications (ASM) and had focal epilepsy (73 %). One-third were 12 months seizure free at their first vaccination. 13 patients (2.5 %) reported a seizure exacerbation following their first vaccination, three of whom required admission. None were seizure-free at baseline. Six of these patients (46 %) had a further exacerbation of seizures with their second vaccine. An additional four patients reported increased seizures only with the second vaccine dose. Seizure exacerbations are infrequently associated with COVID-19 vaccination, mainly in patients with ongoing seizures. The likelihood of COVID-19 infection complications in PWE outweighs the risk of vaccination-related seizure exacerbations.

Effect of the COVID-19 Pandemic on Seizure Control Status in Patients with Epilepsy.

Background: Previous studies have shown that patients with epilepsy (PWE) perceived significant disruption in the quality and provision of care due to the coronavirus disease 2019 (COVID-19) pandemic. The present study aimed to investigate the effect of this pandemic on seizure control status and changes in seizure frequency in PWE. Methods: A consecutive sample of adult PWE registered in the database of Shiraz Epilepsy Center (Shiraz, Iran) was included in the study. In July 2021, phone interviews were conducted with all selected patients. Information such as age, sex, last seizure, seizure type, and frequency during the 12 months before the study, and history of COVID-19 contraction was extracted. The seizure control status of the patients in 2019 (pre-pandemic) was compared with that during the COVID-19 pandemic. Data were analyzed using SPSS software with the Fisher's exact test and Pearson's Chi squared test. P<0.05 was considered statistically significant. Results: A total of 158 patients were included in the study, out of which 62 (39.2%) patients had a stable seizure control status, 47 (29.7%) had fewer seizures, and 50 (31.6%) had more seizures. Breakthrough seizures were reported by 32 (34.4%) patients. Seizure frequency increased in 18 (27.7%) and decreased in 46 (70.7%) patients. Conclusion: Overall, the COVID-19 pandemic has not been a major precipitating factor nor has it affected the seizure control status of PWE. In treated epilepsy, a fluctuating course with periods of seizure freedom followed by relapses is part of its natural history.