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 and parents of children with epilepsy: Experiences and positive changes.

Introduction: The aim of this study is to explore the ways that parents with children or adolescents with epilepsy (CAWE) experienced the restrictive measures, as well as the stressors and challenges that they had to face. Methods: We employed an experiential approach and fifteen Greek-speaking parents answered to an in-depth semi-structured interview, during the second lockdown period. Data were analyzed through the Thematic Analysis (TA). Results: The emerging themes were the challenges encountered in terms of medical monitoring, the "stay-home" impact on their everyday lives as a family, their psycho-emotional responses. More specifically, parents identified the irregular doctor appointments and their struggle to access the hospital services as the most important challenges. Moreover, parents reported that the "stay-home" impact has disrupted their children's daily routines among others. Finally, parents highlighted their emotional strain and worries experienced during the lockdown along with the positive changes that occurred.

Long-term analysis of the effects of COVID-19 in people with epilepsy: Results from a multicenter on-line survey across the pandemic waves.

PURPOSE: The worldwide pandemic caused by SARS-CoV-2 virus posed many challenges to the scientific and medical communities, including the protection and management of fragile populations. People with epilepsy (PWE) are a heterogenous group of subjects, with different treatment regimens and severity of symptoms. During the National lockdown, in Italy many patients with chronic conditions lost their regular follow-up program. The aim of this study was to investigate the impact of COVID-19 on their health status, from the start of the pandemic (March 2020) to July 2021 and one year later. METHODS: We proposed an online questionnaire to subjects followed up at different epilepsy centers located in Milano, Monza & Lodi, three of Lombardy, Northern Italy, the most affected areas by the pandemic. Survey evaluated age, sex, characteristics of patients, type of epilepsy and therapies, COVID-19 diagnosis, vaccines, sleep quality, and anxiety status. RESULTS: Among 178 analyzed surveys, 37 individuals reported symptoms of COVID-19 in closed contacts, including 9 with molecular diagnosis and 16 PWE performing the nasopharyngeal swab with 3 positive cases. One year later, 35 individuals reported at least one symptom overlapping with those typical of COVID-19, 8 received COVID-19 diagnosis, among which 6 were positive for SARS-CoV-2 infection. According to the sleep quality scale assessment, most PWE (52.3%) had poor sleep quality. Assessing anxiety status, 32 (38.1%) had a pathological score. CONCLUSION: In this multicenter study, we observed that PWE do not appear to be at a higher risk of severe COVID-19. It will be fundamental monitoring this group to assess possible differences in long-COVID-19 and/or neuro-COVID-19 prevalence. On the other hand, our survey confirmed the impact of the pandemic on anxiety and quality of sleep in PWE. Thus, it is important to promptly recognize and treat psychological distress in PWE, because it could be a risk factor in seizure aggravation and quality-of-life deterioration. Telemedicine appears to be a useful tool to support patients with chronic diseases, such as epilepsy.

COVID-19 vaccine-related frequently asked questions (FAQs) by people with epilepsy and carers in Iran; educational video is included.

OBJECTIVE: The aim of the current study was to inquire the questions and concerns of people with epilepsy (PWE) about COVID-19 vaccines in order to provide a more realistic list of their frequently asked questions (FAQs). METHODS: We surveyed all the consecutive PWE or their care-givers who were referred to our neurology clinics (Shiraz University of Medical Sciences) during January-February 2022. We collected their questions and concerns in relation to COVID vaccines based on a predesigned brief questionnaire. Informed consent to participate in the study was obtained from the participants. RESULTS: In total, 452 people participated in the study; 291 people (64.4%) did not have any questions or concerns with regard to the COVID-19 vaccination. Having any questions or concerns about COVID-19 vaccination was significantly associated with not being vaccinated. Questions and concerns about the adverse effects of COVID-19 vaccines [seizure worsening, general adverse effects, long-term effects (e.g., infertility, cognitive dysfunction)] were by far the most common questions by people with epilepsy and their carers. CONCLUSION: Our findings may be used by policy-makers to prepare appropriate educational materials to provide the best targeted and tailored information to people with epilepsy and their carers to convince them of the necessity and safety of COVID-19 vaccination. Such an educational material must include enough information on the associated adverse effects of COVID-19 vaccines and should also discuss some other important issues such as indications of these vaccines in special populations and drug-vaccine interactions.

Effectiveness of a Self-Management Program to Improve Cognition and Quality of Life in Epilepsy: A Pragmatic, Randomized, Multicenter Trial.

BACKGROUND AND OBJECTIVES: We conducted a multisite, pragmatic replication trial at 4 New England epilepsy centers to determine the effectiveness of Home-Based Self-Management and Cognitive Training Changes Lives (HOBSCOTCH) in a real-world setting and to assess feasibility of a virtual intervention. METHODS: HOBSCOTCH is an 8-session intervention addressing cognitive impairment and quality of life (QoL) for people with epilepsy (PWE). Participants were recruited from epilepsy centers in 4 states and block-randomized into the following groups: in-person HOBSCOTCH (H-IP), virtual HOBSCOTCH (H-V), and waitlist control. Outcome measures were assessed for all groups at baseline, 3 months, and 6 months; intervention groups received long-term follow-up at 9 and 12 months. RESULTS: A total of 108 participants were recruited, of whom 85 were included in this analysis (age at baseline 47.5 ± 11.5 years; 68% female). Participants completing the in-person intervention (H-IP) had a 12.4-point improvement in QoL score compared with controls (p < 0.001). Pairwise comparisons found a 6.2-point treatment effect for subjective cognition in the H-IP group (p < 0.001). There were no meaningful group differences in objective cognition or health care utilization at any time points and the treatment effect for QoL diminished by 6 months. The virtual intervention demonstrated feasibility but did not significantly improve outcomes compared with controls. Within-group analysis found improvements in QoL for both H-V and H-IP. DISCUSSION: This study replicated the effectiveness of the HOBSCOTCH program in improving QoL for PWE. The study was conducted prior to the COVID-19 pandemic, but the distance-delivered intervention may be particularly well-suited for the current environment. Future research will explore modifications designed to improve the efficacy of H-V and the sustainability of HOBSCOTCH's treatment effect. TRIAL REGISTRATION INFORMATION: ClinicalTrials.gov (NCT02394509). CLASSIFICATION OF EVIDENCE: This study provides Class III evidence that in-person HOBSCOTCH delivery improved subjective measures of cognition in persons with epilepsy.

Awareness and attitude of first-year medical students toward epilepsy in University of Khartoum, Sudan.

PURPOSE: Very little is known about the knowledge and attitude of students about epilepsy at Sudanese universities. Therefore, we aimed to assess knowledge and attitude of undergraduate medical students toward epilepsy. METHODS: A 35-items standardized questionnaire was self-administered to 320 students between December 2020 and February 2021 with a recorded response rate of 61.8%. Google form was used to collect the data. The data was analyzed using R software. RESULTS: Overall, our findings showed a negative trend in the awareness and attitude towards epilepsy. While the majority of students (84.8%) had read or heard about epilepsy, only 43.9% of them had seen someone with epilepsy. Epilepsy was considered contagious and psychological by 1.7% and 56%, respectively. About 62.2% of students believed head / birth trauma is a cause of epilepsy. On the other hand, 15.7 % and 5.1 % of students thought evil eye and divine retribution are also causes of epilepsy, respectively. The latter beliefs were more uniform among participants from rural background (p < .05). Regarding attitude, 19.7% of students considered it inappropriate for a patient with epilepsy to have a child. This attitude correlates with the mother's education as the percentage was higher for students whose mothers had a lower education (pre-college education) (p < .05). The majority of students were aware that certain people with epilepsy need long-term drug treatment; this belief was more uniform among females than in males (p < .05). The vast majority of students (93.9%) thought that a child with epilepsy could succeed in a normal class. Compared to the corresponding group, this belief was found more common in students whose mothers had a higher education (university level and above) (p < .05). CONCLUSION: This study concludes that Sudanese undergraduate students' understanding of epilepsy was minimal, necessitating a well-directed educational campaign to develop a well-informed and tolerant society.

Epilepsy care during the COVID-19 pandemic.

The coronavirus disease 2019 (COVID-19) pandemic has affected the care of all patients around the world. The International League Against Epilepsy (ILAE) COVID-19 and Telemedicine Task Forces examined, through surveys to people with epilepsy (PWE), caregivers, and health care professionals, how the pandemic has affected the well-being, care, and services for PWE. The ILAE included a link on their website whereby PWE and/or their caregivers could fill out a survey (in 11 languages) about the impact of the COVID-19 pandemic, including access to health services and impact on mental health, including the 6-item Kessler Psychological Distress Scale. An anonymous link was also provided whereby health care providers could report cases of new-onset seizures or an exacerbation of seizures in the context of COVID-19. Finally, a separate questionnaire aimed at exploring the utilization of telehealth by health care professionals since the pandemic began was available on the ILAE website and also disseminated to its members. Seventeen case reports were received; data were limited and therefore no firm conclusions could be drawn. Of 590 respondents to the well-being survey (422 PWE, 166 caregivers), 22.8% PWE and 27.5% caregivers reported an increase in seizure frequency, with difficulty in accessing medication and health care professionals reported as barriers to care. Of all respondents, 57.1% PWE and 21.5% caregivers had severe psychological distress (k score >13), which was significantly higher among PWE than caregivers (p<0.01). An increase in telemedicine use during the COVID-19 pandemic was reported by health care professionals, with 40% of consultations conducted by this method. Although 74.9% of health care providers thought that this impacted positively, barriers to care were also identified. As we move forward, there is a need to ensure ongoing support and care for PWE to prevent a parallel pandemic of unmet health care needs.

Risk estimation of SUDEP during COVID-19 pandemic era in a tertiary referral center.

OBJECTIVE: No data exist regarding the impact of the lockdown due to the COVID-19 pandemic on the risk factors of sudden unexpected death in epilepsy (SUDEP). This study aimed to stratify risk factors of SUDEP in relation to COVID-19 lockdown, among patients with epilepsy (PWE) in Cairo University epilepsy unit (CUEU). Therefore, we can detect risk factors and mitigate such factors in the second wave of the virus. METHODS: an observational, cross-sectional study carried on 340 Egyptian patients with active epilepsy. Individual risk identification and stratification was done by using The SUDEP and seizure Safety Checklist, after which sharing risk knowledge to PWE and their caregivers was undertaken. RESULTS: The mean age of patients was 29.72 ± 12.12. The median of the static factors was 4 (IQR 3-5) whereas, the median of the modifiable factors was 2 (IQR 1-3). Epilepsy emergencies (serial seizures or status epilepticus) were reported in 24.1 % of patients, for which non-compliance was the commonest cause, followed by deferral of epilepsy surgery for patients with drug resistant epilepsy (DRE). Stepwise logistic regression analysis showed that use of anxiolytic medications, non-compliance, keeping patients with DRE on dual anti-seizure medications (ASMs), or adding third medication increased the odds of increased seizure frequency by 2.7, 3.5, 16.6 and 6.1 times, respectively. CONCLUSION: Some COVID-19 related issues had influenced the risk of seizure worsening including postponing epilepsy surgery for patients with DRE, non-compliance, and psychiatric comorbidities. Special attention should be paid to these issues to mitigate the risk of SUDEP.

Epilepsy during the COVID-19 pandemic lockdown: a US population survey.

OBJECTIVE: This study sought to understand issues facing people with epilepsy (PWE) during the lockdown period of the COVID-19 pandemic in the United States. METHODS: We conducted a cross-sectional study using a 20-question survey that used SeziureTracker.com, sent to eligible PWE and their caregivers on May 6th, 2020. Questions about demographics and medical history were used to calculate COVID mortality risk odds ratios (OR) compared to a low baseline risk group. RESULTS: In total, 505 responses were collected. Of these, 71% reported no change in seizure rates and 25% reported an increase in seizures, which they attributed primarily to disrupted sleep (63%) and decreased exercise (42%). Mortality risks from COVID-19 had median OR of 1.67, ranging 1.00-906.98. Fear about hospitalization (53%) and concern for loved ones (52%) were prominent concerns. Of the respondents, 5% reported stopping or reducing anti-seizure medications due to problems communicating with doctors, access or cost. Lower-risk COVID patients reported more fear of hospitalization (55% versus 38%, p<0.001) and anxiety about medication access (43% versus 28%, p=0.03) compared with higher-risk COVID patients. Increased anxiety was reported in 47%, and increased depression in 28%. Ten percent without generalized convulsions and 8% with did not know anything about epilepsy devices (VNS, RNS, DBS). SIGNIFICANCE: The COVID-19 pandemic presents unique challenges to PWE, including increased seizure rates, problems with access and cost of life-saving medications. Those with lower COVID-19 risk may have been marginalized more than those with higher risk. Efforts to protect PWE during major public health emergencies should take these findings into account.

The effects of coronavirus disease 2019 (COVID-19) pandemic on people with epilepsy (PwE): an online survey-based study.

During the unprecedented COVID-19 pandemic in 2020, the whole world faced an unusual health emergency. Medical care of chronic neurological diseases, such as Epilepsy, is being neglected. In this survey, we aimed to evaluate the impact of the COVID-19 pandemic on the care of people with Epilepsy (PwE) and to identify their risk factors for seizure worsening to direct better future medical care. We administered a web-based survey (submitted on August 5, 2020). It included socio-demographic, Epilepsy-related, and psychometric data (The Depression, Anxiety, and Stress Scale-21 Items(DASS21) and The Pittsburgh Sleep Quality Index (PSQI). Regression analysis identified predictors of seizure worsening. We collected responses from an online survey of PwE during the pandemic. Out of 151 responders, 71 patients complained of issues related to Epilepsy management and all of whom reached the treating physician and solved their problems. Sleep quality was compromised in 84 patients (55.6%). Two-thirds of the patients in our cohort (66.2%) reported depression, 72.2% reported anxiety, and 75.5% reported stress. Eight patients (5.3%) got COVID-19 infection, and only one patient suffered from mild worsening of the seizure. The main concerns were shortage of medications for 46 (30.5%) patients, getting Coronavirus infection for 67 (44.4%) patients, and seizure worsening for 32 (21.3%) patients. Thirty-five patients (23.2%) reported seizure worsening, which was best explained by retirement or jobless state, having moderate or severe stress, poor sleep quality, vagus nerve stimulation (VNS), fear of getting COVID-19 infection, fear of worsening of seizures, or shortage of medication. During the current COVID-19 pandemic, a significant percentage of PwE experienced worsening of their seizures. This unusual, challenging experience clarifies the urgent need to establish telemedicine services and home-based management of Epilepsy, including ambulatory EEG, home video, and medication delivery to patients' homes to provide continuous medical care.

Responses of people with epilepsy to the COVID-19 pandemic in the time of national lockdown.

The aim of our study was to gather information on how people with epilepsy (PwE) responded to the COVID-19 pandemic during the national lockdown. An online questionnaire was therefore offered to the visitors of the Croatian Association for Epilepsy's website. The 22-items questionnaire was designed to acquire information from adults with epilepsy living in Croatia on demographic data, cognitive, emotional and behavioral responses to the pandemic, and communication problems between patients and their neurologists during the lockdown. Perceived anxiety and fears were expressed with the Likert scale (1-5) and the results of specific fears added to make the Total Fear Score. Results: Out of 186 respondents in total, only 2.8% did not comply with the lockdown measures, and all of those respondents stated that they did not feel any anxiety related to COVID-19. A canceled neurologist examination during the lockdown was significantly associated with pandemic-related anxiety (2.9 ±â€¯1.28 vs. 2.3 ±â€¯1.19, U = 3039, p = 0.001) and fears (Total Fear Score 31.4 ±â€¯9.70 vs. 28.4 ±â€¯9.79, U = 3341, p = 0.036), and 87.4% of respondents expressed the wish to communicate with their neurologist, either by phone/video call (53.0%) or email (34.4%). Conclusion: We think the results of our survey show that the responses from PwE point to a social responsibility appropriate for the existing situation. During future pandemics, telemedicine could have an important role in tackling the fears and anxieties caused by the cancelation of examinations, which corresponds to the wishes expressed by the great majority of our respondents.

Effect of the COVID-19 pandemic on drug compliance and stigmatization in patients with epilepsy.

OBJECTIVE: Pandemics like coronavirus disease 2019 (COVID-19) bring along many individual and social problems. We aimed to investigate what changes the COVID-19 pandemic can cause in patients with epilepsy on drug compliance and stigmatization. MATERIAL AND METHOD: Modified Morisky Scale (MMS) and stigmatization scales were used between October and November 2019 to assess drug compliance and stigmatization in epilepsy patients. These scales were renewed in June and July 2020 in the same patient group to assess the impact of the epidemic on drug compliance and stigmatization in patients with epilepsy. Statistical analysis was performed using the statistical software SPSS 17.0 for Windows (SPSS, Inc). Demographic and clinical characteristics of the patients were recorded in SPSS. The interviews were conducted during the interictal period. Paired-samples t-test was used to compare the stigma scale results of epilepsy patients before and during COVID-19. The Wilcoxon test was used to compare MMS groups before and during COVID-19. RESULTS: A total of 110 patients were included in the study. There was no significant difference between the pre-pandemic and pandemic period in epilepsy stigma scale used to evaluate stigmatization levels in patients. During the pandemic period, it was observed that patients had higher motivation and higher knowledge than before the pandemic (p = 0.048). There were seven patients (6.4%) whose seizure frequency increased during the pandemic period. There were two patients (1.8%) who had difficulty in accessing drugs during the pandemic period. In multivariate analysis, only parameter that predicted an increase in seizure frequency was the number of drugs used In the of COVID-19 period. In correlation analysis, a negative correlation was found between the stigma total score during COVID-19 period and education level. CONCLUSION: A slight increase in the frequency of seizures was observed in our patients during the pandemic period, and no significant problem was experienced in accessing drugs. The COVID-19 pandemic made patients more motivated and informed in drug compliance in the patient group and had no effect on stigmatization.

Impact of COVID-19 on the lives and psychosocial well-being of persons with epilepsy during the third trimester of the pandemic: Results from an international, online survey.

OBJECTIVE: To evaluate the impact of the coronavirus disease 2019 (COVID-19) measures on the lives and psychosocial well-being of persons with epilepsy (PWE) during the third trimester of the COVID-19 pandemic. METHODS: A structured questionnaire investigating different aspects of the lives and psychosocial well-being of PWE during the COVID-19 pandemic was developed. Persons with epilepsy were invited via social media to anonymously respond to a secure web-based online questionnaire (www.icpcovid.com). Responses were collected between July 26th and December 3rd, 2020. Hospital anxiety and depression scales (HADS) were used to screen respondents for depression (HADS-D) and anxiety (HADS-A). RESULTS: Responses of 407 PWE were included in the analysis; 304 (74.7%) respondents were female and 245 (60.2%) living in Europe, 157 (38.6%) in South America, and 5 (1.2%) in Canada. Seventy-six (18.7%) reported a decrease of income during the COVID-19 lockdown, and 122 (30.0%) experienced difficulties in obtaining anti-seizure medication (ASM), mostly (72/122, 59.0%) due to unavailability. Seizure frequency increased in 122 (30.0%); 295 (72.5%) screened positive for anxiety, and 159 (39.1%) for depression. Hundred eighty-eight (46.2%) reported reluctance to seek medical care; 27.3% believed that epilepsy was associated with an increased risk of COVID-19 disease. Forty-six (74.2%) of 62 PWE who were followed up by telephone or video consult were satisfied with this consult. Fifty-five respondents, most (89.1%) of whom were from Europe, had also participated in a previous survey during the early months of the pandemic. In this subgroup, although there was no difference in prevalence of a positive screening for depression or anxiety, mean scores on HADS-A and HADS-D increased from 6.65 ±â€¯3.99 to 7.27 ±â€¯4.01 (p = 0.418), and from 5.84 ±â€¯4.43 to 6.60 ±â€¯4.45 (p = 0.371), respectively. CONCLUSIONS: The COVID-19 pandemic continues to impact the psychosocial and somatic well-being of PWE. To minimize this impact, ensuring uninterrupted access to ASM is essential. Teleconsultations are valid alternatives for continued follow-up, but should include attention to psychosocial well-being. Persons with epilepsy should be more actively informed that epilepsy is not a risk factor for developing (more severe) COVID-19 disease.

LoVE in a time of CoVID: Clinician and patient experience using telemedicine for chronic epilepsy management.

As part of our ongoing interest in patient- and family-centered care in epilepsy, we began, before the onset of the CoVID-19 pandemic, to evaluate the concerns and preferences of those delivering and receiving care via telemedicine. CoVID-19 arrived and acted as an unexpected experiment in nature, catalyzing telemedicine's widespread implementation across many disciplines of medicine. The arrival of CoVID-19 in Ireland gave us the opportunity to record these perceptions pre- and post-CoVID. Data were extracted from the National Epilepsy Electronic Patient Record (EEPR). Power BI Analytics collated data from two epilepsy centers in Dublin. Analysis of data on reasons for using the telephone support line was conducted. A subset of patients and clinicians who attended virtual encounters over both periods were asked for their perception of telemedicine care through a mixed methods survey. Between 23rd December 2019 and 23rd March 2020 (pre-CoVID era), a total of 1180 patients were seen in 1653 clinical encounters. As part of a telemedicine pilot study, 50 of these encounters were scheduled virtual telephone appointments. Twenty eight surveys were completed by clinicians and 18 by patients during that period. From 24th March 2020 to 24th June 2020, 1164 patients were seen in 1693 encounters of which 729 (63%) patients were seen in 748 scheduled virtual encounters. 118 clinician impressions were captured through an online survey and 75 patients or carers completed a telephone survey during the post-CoVID era. There was no backlog of appointments or loss of care continuity forced by the pandemic. Clinicians expressed strong levels of satisfaction, but some doubted the suitability of new patients to the service or candidates for surgery receiving care via telemedicine. Patients reported positive experiences surrounding telephone appointments comparing them favorably to face-to-face encounters. The availability of a shared EEPR demonstrated no loss of care contact for patients with epilepsy. The survey showed that telemedicine is seen as an effective and satisfactory method of delivering chronic outpatient care.

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

The recent COVID-19 pandemic has disrupted care systems around the world. We assessed how the COVID-19 pandemic affected children with epilepsy in Italy, where lockdown measures were applied from March 8 to May 4, 2020. We compiled an Italian-language online survey on changes to healthcare and views on telehealth. Invitations were sent to 6631 contacts of all patients diagnosed with epilepsy within the last 5 years at the BambinoGesù Children's Hospital in Rome. Of the 3321 responses received, 55.6% of patients were seizure-free for at least 1 year before the COVID-19-related lockdown, 74.4% used anti-seizure medications (ASMs), and 59.7% had intellectual disability. Only 10 patients (0.4%) became infected with Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2). Seizure frequency remained stable for most patients during the lockdown period (increased in 13.2%; decreased in 20.3%), and seizure duration, use of rescue medications, and adherence to treatment were unchanged. Comorbidities were more affected (behavioral problems worsened in 35.8%; sleep disorder worsened in 17.0%). Visits were canceled/postponed for 41.0%, but 25.1% had remote consultation during the lockdown period (93.9% were satisfied). Most responders (67.2%) considered continued remote consultations advantageous. Our responses support that patients/caregivers are willing to embrace telemedicine for some scenarios.

Usefulness, limitations, and parental opinion about teleconsultation for rare pediatric epilepsies.

AIM: Evaluation of the usefulness and the parental opinion about teleconsultation (TC) for rare pediatric epilepsies. METHOD: One-month prospective survey of consecutive TCs. All clinics on site have been turned into TC in the context of COVID-19 pandemic. The physicians quoted all TCs while the parents expressed their opinion though an invitation for an online questionnaire. RESULTS: We included 151 TCs (145 patients) among the 259 epilepsy TCs done during the study period. The parental questionnaire has been answered 105 times. The physicians felt confident to organize a TC for the next visit of 74.8% of the children, but some limits were identified such as the absence of physical examination, weight, and psychomotor development evaluation. The physicians felt more confident for a new TC in older patients (9.5 ±â€¯5.5 years versus 5.3 ±â€¯4.3 years) and in stable patients (73.8% confident for instable, 82.8% for stable). Parents were satisfied with TC feeling that it answered health issues in a better manner than a clinic pinpointing the gain of time and the absence of travel. However, half of them would prefer a clinic for the next appointment. INTERPRETATION: Teleconsultation seems useful answering the patients' needs according to both physicians and families. Despite some limitations, it is most likely that TCs become a new part of the clinical activities in rare pediatric epilepsy centers.

Seizure control, stress, and access to care during the COVID-19 pandemic in New York City: The patient perspective.

OBJECTIVE: Our epilepsy population recently experienced the acute effects of the COVID-19 pandemic in New York City. Herein, we aimed to determine patient-perceived seizure control during the surge, specific variables associated with worsened seizures, the prevalence of specific barriers to care, and patient-perceived efficacy of epilepsy care delivered via telephone and live video visits during the pandemic. METHODS: We performed a cross-sectional questionnaire study of adult epilepsy patients who had a scheduled appointment at a single urban Comprehensive Epilepsy Center (Montefiore Medical Center) between March 1, 2020 and May 31, 2020 during the peak of the COVID-19 pandemic in the Bronx. Subjects able to answer the questionnaire themselves in English or Spanish were eligible to complete a one-time survey via telephone or secure online platform (REDCap). RESULTS: Of 1212 subjects screened, 675 were eligible, and 177 adequately completed the questionnaire. During the COVID-19 pandemic, 75.1% of patients reported no change in seizure control, whereas 17.5% reported that their seizure control had worsened, and 7.3% reported improvement. Subjects who reported worsened seizure control had more frequent seizures at baseline, were more likely to identify stress and headaches/migraines as their typical seizure precipitants, and were significantly more likely to report increased stress related to the pandemic. Subjects with confirmed or suspected COVID-19 did not report worsened seizure control. Nearly 17% of subjects reported poorer epilepsy care, and 9.6% had difficulty obtaining their antiseizure medications; these subjects were significantly more likely to report worse seizure control. SIGNIFICANCE: Of the nearly 20% of subjects who reported worsened seizure control during the COVID-19 pandemic, stress and barriers to care appear to have posed the greatest challenge. This unprecedented pandemic exacerbated existing and created new barriers to epilepsy care, which must be addressed.

Recalling the COVID-19 lockdown: Insights from patients with epilepsy.

PURPOSE: The purpose of our study was to explore health changes among people with epilepsy (PWE) during a national COVID-19 lockdown in the context of patients' clinical characteristics and their experience of receiving epilepsy-related medical services. METHODS: A questionnaire was distributed for adult PWE both online and at a tertiary epilepsy center after the end of a national lockdown in Lithuania. PWE were asked to evaluate their health status during the lockdown and estimate changes in their seizure patterns. Additional questions concerned the accessibility and quality of epilepsy-related consultations. RESULTS: The study sample consisted of 143 PWE (59 [41.3%] male, mean age 35.1 ±â€¯13.4 years), 94 (65.7%) completed the survey in person, 49 (34.3%) - online. A deterioration in reported physical and mental health during lockdown was observed (Z = -4.604, p < 0.0001 and Z = -4.253, p < 0.0001, respectively) and 22 (15.4%) PWE reported seizure exacerbation. In an ordinal logistic regression model (analysis of data from all participants), baseline seizure frequency (b = 0.413, p = 0.031), reported physical health before lockdown (b = -0.462, p = 0.031) and the ease of proper antiepileptic drug (AED) use during the imposed restrictions (b = -0.535, p = 0.006) were statistically significant variables associated with changes in seizure frequency. The latter were not affected by modifications in AED use (Mann-Whitney U = 1127.0, p = 0.307) irrespective of the data collection method. With teleconsultations being predominant during the lockdown, an overall decline in the quality of epilepsy-related consultations was observed (Z = -2.895, p = 0.004). Among all participants, 46 (32.2%) lost an epilepsy-related consultation or medical service because of the lockdown. This loss was found to be associated with seizure exacerbation (Mann-Whitney U = 1622.5, p = 0.046). CONCLUSION: Our study indicates that a national COVID-19 lockdown may have led to worse seizure control and health status in some PWE. Easy access to AEDs and their appropriate use may be especially useful to prevent seizure exacerbation during strict COVID-19 restrictions. The quality and accessibility of remote epilepsy-related consultations was suboptimal and may require further improvement during disruption of in-person services.

Impact of COVID-19 pandemic in pediatric patients with epilepsy with neuropsychiatric comorbidities: A telemedicine evaluation.

OBJECTIVE: The objective of this study was to evaluate care needs, emotional and behavioral changes, and parental stress indices in a cohort of pediatric patients with epilepsy with neurocognitive and emotional comorbidities at the time of the coronavirus disease 2019 (COVID-19) pandemic. METHODS: This is a prospective observational study involving pediatric patients with epilepsy with neurocognitive and emotional comorbidities. Included patients were admitted to our hospital between August 2019 and February 2020 for epilepsy and neuropsychiatric assessment, and Child Behavior Checklist (CBCL) questionnaires were filled in by parents. Those patients and their families accepted to participate in a phone follow-up visit in April-May 2020 and to refill CBCL and Parenting Stress Index-Short Form (PSI-SF) questionnaires. Descriptive statistics for demographic and clinical data, CBCL questionnaire scores before and during the COVID-19 pandemic, and PSI-SF scores have been computed. Moreover, results of a short phone survey on the psychological burden during COVID lockdown have been reported. RESULTS: This study provides the parental-proxy report of emotional and behavioral profile changes of 23 pediatric patients with epilepsy and neurocognitive and emotional comorbidities during the COVID-19 pandemic. Concerns for therapy monitoring at the time of lockdown emerged in 43% of families, and 30% of patients showed worries for an altered contact with the referring medical team. Patients with neurocognitive comorbidities were more likely to exhibit behavioral problems, especially externalizing problems compared with patients with a diagnosis of anxiety/depression. CONCLUSION: Our data suggest the importance to monitor disease trajectory and behavior and affective symptoms with telehealth strategies to provide effective care to patients and their families.

Correlates of psychological distress in epileptic patients during the COVID-19 outbreak.

INTRODUCTION: Following the severe consequences of the coronavirus disease 2019 (COVID-19) outbreak, on March 9th, 2020 the Italian Government implemented extraordinary measures to limit viral transmission, including restrictive quarantine measures. Psychological distress represents the seizure-precipitating factor most often reported by patients with epilepsy. To date, no studies have analyzed the role played by the different dimensions of psychological distress quarantine-induced in patients with epilepsy. MATERIALS AND METHODS: We included a total of 40 patients, 18 suffered from generalized, and 22 from focal epilepsy. The patients previously seen in the outpatient clinic during the pre-lockdown period between January and February 2020 were reevaluated after the lockdown period. Psychological distress was evaluated by using the three subscales of Impact of Event Scale-Revised (IES-R). Finally, we employed logistic regression analyses to explore the demographic and clinical features associated to high scores on IES-R. RESULTS: Patients with higher scores on IES-R Intrusion and IES-R Avoidance subscales demonstrated an increased number of epileptic attacks compared to prelockdown period. Multivariate logistic regression analyses showed that a specific subgroup of patients (i.e., older, female with more anxious symptoms) are at higher risk of increased seizure frequency. CONCLUSIONS: Our study confirmed that the frequency of epileptic seizures increased during lockdown when compared to pre-lockdown period. The early identification of patients more vulnerable to worsening is crucial to limit the risk of requiring hospital or clinical treatment during the COVID-19 outbreak.