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.

A cluster-randomized trial comparing home-based primary health care and usual clinic care for epilepsy in a resource-limited country.

OBJECTIVE: To ascertain whether home-based care with community and primary healthcare workers' support improves adherence to antiseizure medications, seizure control, and quality of life over routine clinic-based care in community samples of people with epilepsy in a resource-poor country. METHODS: Participants included consenting individuals with active epilepsy identified in a population survey in impoverished communities. The intervention included antiseizure medication provision, adherence reinforcement and epilepsy self- and stigma management guidance provided by a primary health care-equivalent worker. We compared the intervention group to a routine clinic-based care group in a cluster-randomized trial lasting 24 months. The primary outcome was antiseizure medication adherence, appraised from monthly pill counts. Seizure outcomes were assessed by monthly seizure aggregates and time to first seizure and impact by the Personal Impact of Epilepsy scale. RESULTS: Enrolment began on September 25, 2017 and was complete by July 24, 2018. Twenty-four clusters, each comprising ten people with epilepsy, were randomized to either home- or clinic-care. Home-care recipients were more likely to have used up their monthly-dispensed epilepsy medicine stock (regression coefficient: 0.585; 95% confidence intervals, 0.289-0.881; P = 0.001) and had fewer seizures (regression coefficient: -2.060; 95%CI, -3.335 to -0.785; P = 0.002). More people from clinic-care (n = 44; 37%) than home-care (n = 23; 19%) exited the trial (P = 0.003). The time to first seizure, adverse effects and the personal impact of epilepsy were similar in the two arms. SIGNIFICANCE: Home care for epilepsy compared to clinic care in resource-limited communities improves medication adherence and seizure outcomes and reduces the secondary epilepsy treatment gap.

Impact of COVID-19 pandemic on pediatric patients with epilepsy in Jordan: The caregiver perspective.

OBJECTIVES: The recent COVID-19 pandemic has disrupted care systems around the world. We assessed the impact of COVID-19 lockdown on the care of pediatric patients with epilepsy in Jordan. Potential predictors for seizure control during COVID-19 outbreaks were investigated. METHODS: A cross- sectional survey was conducted on pediatric patients with epilepsy in Jordan, between January and February 2021, via online questionnaires. The collected data included demographic information, epilepsy-related characteristics, views of caregivers and changes in seizure control during COVID-19 outbreak. RESULTS: A total number of 672 subjects were screened, 276 were eligible, and 154 completed the questionnaire adequately. Two thirds of caregivers (66.2%) reported that the COVID -19 outbreaks prevented their child from getting proper epilepsy care and 28.6% reported difficulty giving the drugs to their child on time because of loss of daily routine. In addition, more than half (55.8%) reported difficulty obtaining antiseizure medicines (ASMs). On the other hand, 77.3% of caregivers reported that seizure status remained unchanged or improved for their children during the COVID-19 and 22.7% reported worsened seizure control. The number of antiseizure medicines taken by patients (p < 0.001), age (p = 0.032), residency area (p = 0.013) and the difficulty in giving the medicine during COVID-19 pandemic (p = 0.002) were the major factors influencing the seizure worsening experienced by patients. CONCLUSION: Almost one of every five patients reported worsened seizure control during the outbreak of COVID-19 in Jordan. Moreover, two thirds of caregivers reported poor epilepsy care. This finding highlights the need to implement organized and efficient telemedicine programs devoted to epilepsy care.

Considering temporality in causal relationship between seizure worsening and psychological stress in patients with epilepsy during the COVID-19 pandemic: A systematic review.

OBJECTIVE: To investigate whether published studies that identified a causal relationship between psychological stress and seizure worsening in patients with epilepsy during the coronavirus disease 2019 (COVID-19) pandemic considered the temporality of Hill's criteria. METHOD: A systematic review approach was used to comprehensively search MEDLINE, CENTRAL, EMBASE, and ClinicalTrials.gov databases for relevant studies. Studies that reported an association between psychological stress and seizure worsening in patients with epilepsy during the COVID-19 pandemic were included accordingly. The quality of assessments in each study was evaluated and an assessment for considering temporality in the causal relationship between the two events in each study was carried out. RESULTS: Seventeen studies were included in the analysis. Most (14/17) were cross-sectional studies and only four out of these 17 studies (23.5%) considered temporality in the causality. Further, these four studies did not consider temporality in the study design, they only described it as a limitation. CONCLUSION: We found that many articles reported a causal relationship between psychological stress and seizure worsening without considering temporality. As both researchers and readers, we need to consider temporality when interpreting the causal relationship between increased psychological stress and seizure worsening in patients with epilepsy during the COVID-19 pandemic.

Correlation of Seizure Increase and COVID-19 Outbreak in Adult Patients with Epilepsy: Findings and Suggestions from a Nationwide Multi-centre Survey in China.

OBJECTIVES: To investigate the impact of the COVID-19 outbreak on the behaviours, mental health and seizure control of adult patients with epilepsy (PWE) and to identify the correlation of seizure increase and the COVID-19 outbreak to guide the medical care of individuals with epilepsy during a public health crisis. METHODS: This study was conducted at 28 centres from February 2020 to April 2020. Participants filled out a 62-item online survey including sociodemographic, COVID-19-related, epilepsy-related and psychological variables and were divided into two groups based on whether their seizure frequency increased during the COVID-19 pandemic. Chi-square tests and t-tests were used to test differences in significant characteristics. Multiple logistic regression analyses were used to identify risk factors for seizure worsening. RESULTS: A total of 1,237 adult PWE were enrolled for analysis. Of this sample, 31 (8.33%) patients experienced an increase in seizures during the pandemic. Multivariate logistic regression suggested that feeling nervous about the pandemic (P < 0.05), poor quality of life (P = 0.001), drug reduction/withdrawal (P = 0.032), moderate anxiety during the COVID-19 outbreak (P = 0.046) and non-seizure free before the COVID-19 outbreak (P < 0.05) were independently related to seizure increase during the pandemic. CONCLUSIONS: During the COVID-19 pandemic, PWE with poor quality of life and mental status, as well as AED reduction/withdrawal, were more likely to experience seizure increase. This observation highlights the importance of early identification of the population at high risk of seizure worsening and implementation of preventive strategies during the pandemic.

Impact of COVID-19 on quality of life in people with epilepsy, and a multinational comparison of clinical and psychological impacts.

BACKGROUND: This study aimed to determine the relationship among the clinical, logistic, and psychological impacts of COVID-19 on people with epilepsy (PWE), and the impact of COVID-19 on the quality of life. METHOD: This is a cross-sectional anonymized web-based study on PWE, using an online questionnaire to assess the clinical, logistic, and psychological impacts of COVID-19, including Hospital Anxiety Depression Scale (HADS) and Quality of Life in Epilepsy Inventory (QOLIE-31). RESULT: 461 patients were recruited, with a mean age of 39.21 ±â€¯15.88 years, majority female (50.1%), with focal epilepsy (54.0%), and experienced seizures at least once yearly (62.5%). There were 13.0% experienced seizure worsening during COVID-19 period, which were associated with baseline seizures frequency ≥ 1 per month (32.0% vs. 6.2%, p < 0.001), worries of seizure worsening (18.0% vs. 10.9%, p < 0.001), difficulty to go emergency unit (24.4% vs. 10.4%, p < 0.001), AEDs ran out of stock (23.2% vs. 11.6%, p < 0.05), self-adjustment of AED dosages (26.4% vs. 11.3%, p < 0.001), inadequate sleep (22.4% vs. 9.2%, p < 0.001), and stress (23.4% vs.10.1%, p < 0.01). Participants experiencing seizure worsening reported greater anxiety (8.10 ±â€¯5.011 vs. 4.84 ±â€¯3.989, p < 0.001) and depression (6.05 ±â€¯3.868 vs. 3.86 ±â€¯3.589, p < 0.001). Logistic regression showed baseline seizures frequency >1 per month (OR, 14.10) followed by anxiety (OR, 3.90), inadequate sleep (OR, 0.37), and treated in UMMC (OR, 0.31) as the predictors for seizure worsening during COVID-19 period. Poorer total QOLIE-31 score was noted in those with seizure worsening (48.01 ±â€¯13.040 vs. 62.15 ±â€¯15.222, p < 0.001). Stepwise regression highlighted depression as the main negative predictor for quality of life (ß = -0.372, p < 0.001), followed by anxiety (ß = -0.345, p < 0.001). CONCLUSION: A significant number of PWE experienced seizure worsening during COVID-19 period, which was related to the clinical, logistic, and psychological factors. Quality of life was affected by the seizure worsening and the psychological stress.