Reassures Me There Are People Around Who Care about Me: Analyzing Meanings of Support for People with Epilepsy

Aims The study aimed to examine the nature and outcomes of social support for the well-being and quality of life (QoL) of adults with epilepsy. Methods The Australian Epilepsy Longitudinal Survey's 5 th Wave included the Medical Outcomes Study Modified Social Support Survey on four dimensions of social support and the QOLIE-31. Both numerical data and open-ended responses were analyzed quantitatively and qualitatively. A mixed method was used where quantitative analysis used t -tests, analysis of variance and block recursive regression, and qualitative analysis identified themes. Results Three-hundred thirty-two people with epilepsy (PWE) participated. The quantitative component showed that for emotional/informational support being older and living alone were key factors. These as well as household income were important in tangible support. For affectionate support living alone and household income were factors, but only income was a factor for positive social interaction. In addition, only positive social interaction predicted increased QoL. In the qualitative component of the study both positive and negative supports were identified for the emotional/informational supports. Many reported the benefits of having information, although some reported failure to have their needs taken seriously by health professionals or epilepsy associations. Inability to drive was an important feature of negative tangible support as was finding some assistive services unaffordable. Reports of positive social interaction identified being accepted as a person with epilepsy that is the primary concern. Peer support plays a role here. Discussion The findings of factors affecting the four dimensions of support in this study have supported a number of studies. This includes the effects of positive social interaction on QoL. The qualitative analysis supports these results, but it also contributes to deeper understanding of support in the lives of PWE. Conclusion Social support is a particularly important issue for PWE. The results of this study demonstrate the complexities and benefits of obtaining the appropriate forms of support. This survey took place before the coronavirus disease 2019 pandemic and it may well be that this phenomenon affects PWE's support needs. Copyright © 2023. Indian Epilepsy Society. All rights reserved.

Experiences of adult epilepsy patients with COVID-19 infections and vaccinations

Objective: To assess the course of COVID-19 infections and the tolerability of the mRNA vaccines of Moderna and Pfizer/BioNTech and the viral vector vaccines from Astra Zeneca and Johnson & Johnson in adult patients with epilepsy (PWE). Method(s): From July 2020 to July 2021, we consecutively included adult outpatients with confirmed epilepsy. These PWE were interviewed about COVID-19 infections and vaccinations. Results of follow-up visits were added until the cut-off date (December 31, 2021). The data of COVID-19-infected without vaccinations or fully vaccinated PWE without COVID-19 infections were analyzed. Full vaccination was defined as a double vaccination with the Pfizer/BionTech, Moderna, or Astra Zeneca vaccines or a single Johnson & Johnson vaccination. Result(s): At cut-off, 612 of 1152 PWE fulfilled the inclusion criteria: 51 PWE had been infected without vaccination and 561 had full vaccination without infection. Among the infected PWE, 76.5% presented with symptoms;9.8% had a severe course (one death). The leading symptoms were influenza-like disorders (48.7% of infected PWE with symptoms), anosmia (28.2%), and ageusia (20.5%). Seizure increases or relapses after sustained seizure freedom occurred in 7.8%. Adverse events (AEs) were reported by 113 vaccinated PWE (20.1% of all vaccinated PWE). The leading AEs were fatigue, fever, and headache. The AE rate per vaccine was 14.0% for Pfizer/BionTech, 32.7% for Moderna, 25.8% for Astra Zeneca, and 46.2% for Johnson & Johnson. Of the AEs, 93.3% lasted <=1 week. Seizure increase or relapse occurred in 1.4% and was significantly less frequent than in the infected group (p= 0.0016). Conclusion(s): The course of COVID-19 infections and the tolerability of the vaccines were similar as in the general population, yet, seizure worsening occurred more often after the infection than after the vaccination.Copyright © 2023, The Author(s), under exclusive licence to Springer Medizin Verlag GmbH, part of Springer Nature.

Clinical features of epilepsy course during COVID-19.

Background. Currently, a great body of data regarding the link between epilepsy and novel coronavirus infection (NCI) has been accumulated. Numerous studies have paid a great attention to rise in frequency and severity of epileptic seizures as well as failure of remission in individuals suffering from epilepsy. Objective(s): to study clinical and mental changes during NCI in patients with epilepsy. Material and methods. Fifty patients with epilepsy were examined, who were divided into two groups depending on the NCI history: Group 1 (main) - 25 patients undergone COVID-19 in the period from 2020 to 2022;Group 2 (control) - 25 patients not undergone COVID-19 during the same period. Slinical-anamnestic and psychometric methods were used as well as the following scales and questionnaires: National Hospital Seizure Severity Scale (NHS-3), Mini-Mental State Examination (MMSE), Hospital Anxiety and Depression Scale (HADS), Beck Depression Inventory (BDI), Medical Outcomes Study Sleep Scale (MOS-SS), Multidimensional Fatigue Inventory (MFI-20). Results. In patients with epilepsy who had undergone COVID-19, there was a tendency for more frequent epileptic seizures and increased severity of seizure course. Among such patients, mild depression and more severe asthenia, cognitive impairment, moderate sleep disturbances were more common than in the control group. Conclusion. The NCI pandemic has had a pronounced negative impact on the severity of epilepsy (the underlying disease).Copyright © 2023 IRBIS LLC. All Rights Reserved.

Clinical features of epilepsy course during COVID-19

Background. Currently, a great body of data regarding the link between epilepsy and novel coronavirus infection (NCI) has been accumulated. Numerous studies have paid a great attention to rise in frequency and severity of epileptic seizures as well as failure of remission in individuals suffering from epilepsy. Objective(s): to study clinical and mental changes during NCI in patients with epilepsy. Material and methods. Fifty patients with epilepsy were examined, who were divided into two groups depending on the NCI history: Group 1 (main) - 25 patients undergone COVID-19 in the period from 2020 to 2022;Group 2 (control) - 25 patients not undergone COVID-19 during the same period. Slinical-anamnestic and psychometric methods were used as well as the following scales and questionnaires: National Hospital Seizure Severity Scale (NHS-3), Mini-Mental State Examination (MMSE), Hospital Anxiety and Depression Scale (HADS), Beck Depression Inventory (BDI), Medical Outcomes Study Sleep Scale (MOS-SS), Multidimensional Fatigue Inventory (MFI-20). Results. In patients with epilepsy who had undergone COVID-19, there was a tendency for more frequent epileptic seizures and increased severity of seizure course. Among such patients, mild depression and more severe asthenia, cognitive impairment, moderate sleep disturbances were more common than in the control group. Conclusion. The NCI pandemic has had a pronounced negative impact on the severity of epilepsy (the underlying disease).Copyright © 2023 IRBIS LLC. All Rights Reserved.

Clinical features of epilepsy course during COVID-19.

Background. Currently, a great body of data regarding the link between epilepsy and novel coronavirus infection (NCI) has been accumulated. Numerous studies have paid a great attention to rise in frequency and severity of epileptic seizures as well as failure of remission in individuals suffering from epilepsy. Objective(s): to study clinical and mental changes during NCI in patients with epilepsy. Material and methods. Fifty patients with epilepsy were examined, who were divided into two groups depending on the NCI history: Group 1 (main) - 25 patients undergone COVID-19 in the period from 2020 to 2022;Group 2 (control) - 25 patients not undergone COVID-19 during the same period. Slinical-anamnestic and psychometric methods were used as well as the following scales and questionnaires: National Hospital Seizure Severity Scale (NHS-3), Mini-Mental State Examination (MMSE), Hospital Anxiety and Depression Scale (HADS), Beck Depression Inventory (BDI), Medical Outcomes Study Sleep Scale (MOS-SS), Multidimensional Fatigue Inventory (MFI-20). Results. In patients with epilepsy who had undergone COVID-19, there was a tendency for more frequent epileptic seizures and increased severity of seizure course. Among such patients, mild depression and more severe asthenia, cognitive impairment, moderate sleep disturbances were more common than in the control group. Conclusion. The NCI pandemic has had a pronounced negative impact on the severity of epilepsy (the underlying disease).Copyright © 2023 IRBIS LLC. All Rights Reserved.

Epilepsy Mortality in Wales during Covid-19

Purpose We aimed to compare mortality rates in people with epilepsy in Wales during the pandemic with pre-pandemic rates. Methods We performed a retrospective study using populationscale anonymised health records. We identified deaths in people with epilepsy (DPWE), those with a diagnosis of epilepsy, and deaths associ- ated with epilepsy (DAE), where epilepsy was recorded as a cause of death. We compared death rates in 2020 with average rates in 2015-2019 using Poisson models. Results There were 188 DAE and 628 DPWE in Wales in 2020 (death rates: 7.7/100,000/year and 25.7/100,000/year). The average rates for DAE and DPWE from 2015 to 2019 were 5.8/100,000/year and 23.8/100,000/year, respectively. Death rate ratios (2020 compared to 2015-2019) for DAE were 1.34 (95%CI 1.14-1.57, p<0.001) and for DPWE were 1.08 (0.99-1.17, p = 0.09). The death rate ratios for non- COVID deaths (deaths without COVID mentioned on death certificates) for DAE were 1.17 (0.99-1.39, p = 0.06) and for DPWE were 0.96 (0.87-1.05, p = 0.37). Conclusions The significant increase in DAE in Wales during 2020 could be explained by the direct effect of COVID-19 infection. Non-COVID-19 deaths have not increased significantly but further work is needed to assess the longer-term impact.

Development of an Ictal Spect Service for Irish Epilepsy Patients

Purpose: Beaumont Hospital (Dublin) is a large academic teaching hospital and specialist centre for complex epilepsy and epilepsy surgery. Ictal SPECT is a unique Nuclear Medicine examination that can be used as a tool in pre-surgical localisation of an epileptic focus. During a seizure there is hyper perfusion in the epileptogenic focus. While the patient is being EEG monitored in the Epilepsy Monitoring Unit (EMU), rapid injection of a brain perfusion radiopharmaceutical at seizure onset followed by ictal SPECT imaging can provide the epilepsy surgical team with more specific localisation information to aid presurgical planning. In view of the potential benefits to epilepsy patients an Ictal SPECT service has been established in Beaumont Hospital. There are many challenges and complex issues to address when developing a routine Ictal SPECT service in order to provide a quality and safe service to patients and staff. A multi-disciplinary approach was taken when planning and developing this new service in Beaumont Hospital. Material(s) and Method(s): This procedure is carried out between the following departments: Nuclear Medicine Department, Neurology, the Epilepsy Monitoring Unit (EMU) and Neuro Physics. The following areas required careful development and planning for the project: (1) Patient Selection and Preparation: (2) Radiopharmaceutical Selection, Preparation and Dispensing: (3) Nuclear Medicine Radiation Protection Issues: (4) Patient monitoring and administration of Radiopharmaceutical on the EMU: (5) Nuclear Medicine Patient Scanning: (6) Data Post Processing (SISCOM): A site visit to UZ Leuven hospital Belgium occurred early in the project, this provided invaluable information and support from an experienced centre with a long established Ictal SPECT service. Result(s): There have been many unexpected challenges during the establishment of this service: - Supply issues of the Radiopharmaceutical tracer - The impact of Covid-19 - An issue with absorption of the radiopharmaceutical within the Delivery tubing system To date two patients have successfully undergone Ictal SPECT exams, both were administered the radiopharmaceutical within seconds of the onset of a seizure. The results of the Ictal SPECT exam were discussed at a multi-discipline meeting and were used in the patient pre-surgical planning. Conclusion(s): Ictal SPECT is an intricate procedure that requires extensive planning and co-operation between the multi-disciplinary team in order to provide a quality and safe service to the patient. Beaumont Hospital hopes to continue and expand this service.Copyright © 2023 Southern Society for Clinical Investigation.

Epilepsy Connections'Beyond the Clinic Walls

Objective: As part of Epilepsy Connections' role in providing support to people affected by epilepsy, we aim to raise awareness of epilepsy at a community/grassroots level, with particular focus on: (1) school communities through our Schools Project/Seizure-Smart Schools;and (2) providing fun activities for families affected by childhood epilepsies (FACE). We recognise that for young people with epilepsy (YPE) to live their lives to the full, their needs go much further than the clinical involvement of their healthcare teams. Our objectives were (1) To promote knowledge of epilepsy, seizures and how to help when a seizure happens'so that YPE can go about their lives, confident that the people around them are informed and respectful;and (2) to provide fun activities for YPE and their families. Method(s): (1) Age-appropriate playground-based activities (message games, story time/roleplay/drama, arts and crafts, using hands-on brain/neuron models) for nursery/primary classes, and workshops for secondary/college students/school staff;(2) large-scale public events (virtual festivals and face-to-face) in collaboration with the Glasgow Science Centre, and EPNA Congress in Glasgow;(3) bespoke, supported days out for individual families;(4) Three residential trips to Ardentinny Outdoor Education Centre since September 2021, for families new to us and those already accessing our services. Result(s): (1) Engagement with thousands of participants;(2) YPE and families took part in fun, adventurous outdoors activities (canoeing, gorge walking, climbing, abseiling, forest and beach walks), got together for meals, informal peer support and family disco! Conclusion(s): Families value having breaks and activities in a supportive, inclusive and bespoke way. We re-modelled how we provide our activities within school communities and with FACE, to reflect COVID-19 protective measures. Nonetheless, the ongoing impact of COVID-19 restricts opportunities to engage.

Factors Associated with Anxiety Scores in People with Epilepsy in Neurological Installations of Haji Adam Medan Center General Hospital

BACKGROUND: Anxiety disorder is the most prevalent comorbidity that may persist chronically in individuals with epilepsy. Unfortunately, anxiety is commonly ignored and rarely reported by epileptic patient. Therefore, early intervention and proper treatment should be addressed in these people. Acknowledging risk factors related to anxiety among epileptic patients may be useful in tailoring more appropriate psychiatric support. AIM: The aim of our study is to investigate risk factors related to anxiety among epileptic patients. METHOD(S): This cross-sectional predictive analytical multivariate study was conducted through March to May 2021 in Haji Adam Malik General Hospital Medan involving 84 epileptic patients visiting Neurology outpatient clinic who fulfilled inclusion and exclusion criteria COVID-19 health protocols. Anxiety score was assessed using HADS-A self-reported questionnaire. RESULT(S): We found that most of our patients are female who have experienced epilepsy for around 3 years. Exacerbations occurs approximately 4 times a year with duration of 10-20 min. Finally, we found that age, seizure duration, epileptic frequency, and gender are independent risk factors for anxiety severity among epileptic patients. CONCLUSION(S): Age, seizure duration, epileptic frequency, and gender are independent risk factors for anxiety severity among epileptic patients. Copyright © 2022 Hanny Soraya, Mustafa M. Amin, Muhammad Surya Husada, Elmeida Effendy.

Education increases teleneurology utilization: towards the Intersectoral Global Action Plan on epilepsy in Africa

Background and aims: Epilepsy burden in sub-Saharan Africa (SSA) has increased dramatically in the last 20 years. People with epilepsy (PWE) are estimated to be over 20 millions, with about 1 neurologist every 3-5 millions inhabitants, meaning more than 90% of epileptic patients are managed by health workers (HW) with insufficient education in Epilepsy, and 75% of them have no access to treatments. Moreover COVID-19 pandemic is affecting epilepsy management in SSA through care disruption. Teleneurology has the potential to improve this situation, although poor education of HW is associated with its underutilization. We measured the changes of teleneurology requests from primary cares in SSA after an education program on epilepsy. Methods: Global Health Telemedicine (GHT) offers remote advices and education to HW of the Disease Relief through Excellent and Advanced Means (DREAM) program active in 10 SSA countries. GHT-DREAM recently started an epilepsy program in Malawi and Central African Republic (CAR) with education and training courses delivered both locally and remotely. Results: In Malawi and CAR DREAM follows 18,770 patients, 569 (3,0%) suffering from epilepsy. The total number of teleneurology requests increased from 91 in 2019 to 141 in 2020 to 802 in 2021;>90% were for PWE. Conclusion: Education and training in epilepsy increased the number of tele-requests by improving knowledge and communication between SSA HW and European neurologists. Partnerships can bring neurologists where there are none, contributing to limit COVID-19 care disruption thus reducing the treatment gap in SSA. Our results move towards the Intersectoral Global Action Plan 2022-2031 in SSA. (Figure Presented).

Survey on medical care of patients with epilepsy during the coronavirus pandemic

Introduction: The coronavirus 2019 pandemic represented a great challenge for the health system. The demand for hospital beds and resources for the treatment of the coronavirus has forced the health service to reorganize and the National Government to implement strict measures to reduce the rate of infections. Objective: The objective of the study was to determine whether the care and access to medication of patients with epilepsy was affected during mandatory quarantine. Materials and methods: This is a cross-sectional study that was conducted in two medical health centers, one public and one private, in the Autonomous City of Buenos Aires, Argentina. A survey was designed in the Google Forms platform and sent by email between April and June 2020 to patients with epilepsy treated in both institutions. Questions on demographic characteristics, access to the health care system and changes in the frequency of seizures were included. Results: 488 patients were contacted, obtaining a response of 50.8%. Regarding the health care coverage, 36.5% of the patients did not have any. 49.1% had problems accessing to the medications. 29.7% of the patients contacted referred an increase in the frequency of seizures. The main contact method used was email (35%) and telephone (15.4%). 58% obtained their prescriptions by alternative methods while 13% reported not having access to them. Conclusions: Our results reflect the importance of incorporating alternative means of communication in special situations to guarantee the care and treatment of patients with chronic diseases.

Seizure Control During COVID-19: A Study Using the Responsive Neurostimulation System (RNS)

Objective: To better understand the impact of the COVID-19 pandemic on seizure frequency in patients with epilepsy (PWE) with an RNS implanted. Background: The COVID-19 pandemic represents a challenge to care of PWE. Some reports suggest COVID-19 can cause increased seizures in PWE, which may be related to psychosocial distress during the pandemic. Conversely, the pandemic may have brought about a decrease in daily demands and stressors, which could cause decreased seizure frequency in PWE. While surveys and record reviews provide some indication of the effect of the pandemic on seizures, RNS can potentially provide more accurate counts. Design/Methods: Patients with an RNS system implanted before September 2019 were included. We analyzed the weekly number of long episodes counts (LEC) as a proxy for seizures for 6 months (26 weeks) prior to the COVID-19 pandemic declaration (Sep 2019-Mar 2020) and after the declaration (Mar 2020-Sep 2020). Additionally, telephone surveys and chart review were conducted to assess patient mental health during the pandemic. The correlation between change in LEC and reported stressors was assessed. Results: Twenty patients were included. The average age was 41.2 years (SD=11.9). Thirteen (65%) patients were male. Comparing the pre-COVID-19 period to COVID-19 period, we found 5 (25%) patients had increased LEC compared to 15 (75%) patients who did not have significant increase in LEC. Change in anti-seizure medications (p = 0.031) and bilateral seizure types (p=0.031) were associated with an increase in LEC. Anxiety(p=1.00), depression(p=0.58), and sleep disturbances(p=1.00) were not significantly correlated with increases in LEC. Conclusions: Contrary to some published literature, we did not find a significant increase in seizures following the pandemic when assessed using the objective measure of RNS LEC and subjective self-reports on a telephone survey. Additionally, we did not find a correlation between pandemic-related stress and seizures in those who were found to have increased seizures.

Assessment of COVID-19 Vaccination Status and Vaccine Tolerance in Patients with Epilepsy in the State of Kentucky

Objective: We aimed at assessing tolerance and impact of various vaccines against Coronavirus Disease (COVID-19) on seizures, particularly in people with epilepsy (PWE). We also sought to identify the barriers to vaccination and hesitancy among unvaccinated PWE. Background: The safety and tolerability of the various types of COVID-19 vaccines have been a cause of distress among PWE. In order to assess these concerns, we partnered with the Epilepsy Foundation of Kentuckiana (EFKY) and designed survey for PWE. Design/Methods: An online anonymous 24-item survey was designed and distributed by the EFKY via an online link and a quick response (QR) code. This survey included questions pertaining to patient's demographics, seizure status, type of vaccination and status, as well as side effects experienced. In addition, we investigated barriers and hesitancy to vaccination. The survey is currently ongoing. Results: Twenty-seven adult PWE completed the survey thus far, and among them 24 were vaccinated. In terms of side effects, sixteen (60%) participants reported common vaccination side effects like headache, malaise, fatigue, fever, and body aches. None of the vaccinated participants have reported seizure occurrence in the first 24-72 hours post vaccination or worsening of their baseline seizure frequency. The 3 unvaccinated participants reported a lack of interest in vaccination. None of the surveyed individuals till date reported a prior COVID infection. We are anticipating additional participants to complete the survey before final data analysis. Conclusions: Our preliminary data suggests that vaccination against COVID-19 in PWE in Kentucky appears to be overall well tolerated without evidence of seizure exacerbation. The majority of the surveyed PWE were vaccinated. The survey is currently still ongoing.

Quality of Life in Epilepsy patients in India during Covid-19 pandemic

Objective: To determine the change in Quality of Life (QOL) in epilepsy patients in India during the Covid-19 pandemic. Background: It is important to determine the effect of this Covid-19 pandemic on the QOL of epilepsy patients in India. This will educate us about the needs of this community of patients and this will inform the types of interventions that are needed to improve the QOL of these patients. Design/Methods: A QOLIE-10-P questionnaire was administered to 172 epilepsy patients before the pandemic started and then it was again administered to the same patients during the pandemic. All patients were from a single Epilepsy Center in Mumbai, India. Results: We compared the results of a baseline QOLIE-10-P, pre-pandemic, with results of a QOLIE-10-P administered during the pandemic in the same patients. This was administered in each of the 172 epilepsy patients. The aggregate and individual scores showed that there was improvement in trouble in transportation, work limitation and social limitations. As the country was in lockdown most people worked from home, there was little need for transportation and there was minimal social interaction allowed. There was also improvement in scores about trouble with side effects of AEDs. There was also improvement in QOL in last 4 weeks and less distress with the epilepsy related QOL. There was worsening in the score about being afraid of having a seizure, there was an acute shortage of hospital beds during the pandemic. There was also worsening in feeling downhearted and low. Conclusions: This is the first study done about the Quality of Life of Epilepsy patients in India, a country with over 10 million epilepsy patients. These findings will help us understand how the epilepsy patient's QOL is being affected during the Covid-19 pandemic in India.

Breakthrough Seizures after COVID-19 Vaccines in Patients with Glioma

Objective: Identify patients who had breakthrough seizures following COVID-19 vaccine administration. Background: Neurologic complications occur following vaccinations. The coronavirus (COVID-19) vaccines are also associated with neurological side effects. For example, 100 cases of Guillian Barre Syndrome were reported following 12.5 million doses of the Johnson & Johnson vaccine. Five case reports of thrombosis and thrombocytopenia, with corresponding cerebral venous sinus thrombosis (CVST) were reported with the Johnson & Johnson vaccine. Lastly, a recent study noted that out of 54 patients with epilepsy, one patient had increased seizure frequency following vaccination and another patient had a new seizure semiology. The impact of the COVID-19 vaccines on primary brain tumor patients is unknown. Design/Methods: We analyzed the 866 patients at the Alvord Brain Tumor Center from January 2021 to April 2021. We describe here 15 patients with primary brain tumors who experienced breakthrough seizures within a week of receiving the first or second dose of the Moderna or Pfizer vaccines. Results: Sixty percent of patients had glioblastoma, the median age of 60 years, with males and females relatively equally affected (47% vs. 53%). Approximately 70% were not on active treatment at the time of seizure breakthrough. The last episode of seizure was at least six months prior to the seizure breakthrough in 33% of patients. Seizures occurred a median of one day after the most recent vaccine. Seizure breakthrough reports were similar between first and second vaccine doses (47% vs. 53%). In two patients, seizure following their COVID-19 vaccine was the first manifestation of their primary brain tumor. Conclusions: COVID-19 vaccines may lower seizure threshold by systemic inflammation or sleep disruption. Given the likely increased risks of COVID-19 infection among patients with brain tumors, vaccination is still recommended. Patient counseling on sleep hygiene, fever, and strict adherence to seizure medication is crucial to mitigate the risk of seizure post-vaccination.

Serving Los Angeles County Patients with Teleneurology, A Clinical Tool Here to Stay

Objective: To demonstrate the benefits of teleneurology visits for a vulnerable epilepsy population served at the epilepsy clinic in Los Angeles County Medical Center servicing the greater Los Angeles metropolitan area Background: We are a large safety-net hospital in Los Angeles county, providing Level 4 epilepsy care to patients who are uninsured/under-insured. Most are drug-resistant and have physical, social, and/or economic factors that limit their ability to receive healthcare, including epilepsy care. One main factor is that none can drive, and many have difficulties arriving to their in-person appointments due to limited transportation means (i.e. walking, public transportation). The current COVID-19 pandemic further limits their access to healthcare with reduced public services. However, the recent expanded access to teleneurology has been a significant change for this population by improving their access to healthcare and follow up. Regular follow up infers improved compliance leading to better quality of care. We readily and aggressively implemented teleneurology services for our patients. Teleneurology appointments (including phone and video) for our patients began March 20, 2020 with all appointments prior to this date being in-person appointments only. Design/Methods: We compared the rates of no-show appointments 12 months before (no teleneurology) and 12 months after (with teleneurology) March 20, 2020 by assessing significance using a z-test. Results: The rate of no-show appointments significantly falls from 33.7% (of 1711 patients) before to 15.3% (of 1684 patients) after the implementation of teleneurology (p<0.05). Conclusions: Teleneurology is a critical and effective clinical tool for improving patient compliance with clinic visits and continuing therapy. Teleneurology ensures justice in distribution of medical care even for an underserved population of patients with epilepsy in Los Angeles County.

THE FUTURE OF OUTPATIENT APPOINTMENTS: DO PATIENTS WITH EPILEPSY PREFER REMOTE CONSULTATIONS?

In light of the COVID 19 pandemic, outpatient services have been restructured to facilitate remote con-sultations. As the pandemic has entered second and third 'phases', patients' perspectives regarding remote consultation are essential. Methods Questionnaires were sent to PWE and carers attending tertiary epilepsy services at University Hospitals Birmingham. 25% of the population is from an ethnic minority. Results 378 questionnaires were analysed-278 in phase A, 100 in phase B. 57.0% respondents were female, 42.9% over 50 years. 8.2% had comorbid non epileptic attacks. 55.8% respondents preferred telephone consultation in phase A, 66% in phase B. 34.9% preferred face to face in phase A, dropping to 32% by phase B, the majority being non-white. 6.83% selected video consultation in phase A, none in phase B. The proportion citing 'safety' as a reason for remote consultation in phase A (23%) was greater than in B (5%) P<0.001 The proportion citing 'ease of access' as key increased by phase B, though non significantly p=0.03. Conclusion Ease of access continues to drive preferences for telephone consultations with infection risk in outpatients becoming less of a concern. Translating services are essential if remote consultation is to be accessible to all.

In hospital outcomes in older adults with COVID-19 and epilepsy

COVID-19 causes high rates of mortality and morbidity in older adults, especially those with pre-existing conditions. Since epilepsy is associated with premature mortality, we aimed to evaluate in-hospital outcomes, including mortality, in older compared (>65) to younger adults (<65) with COVID-19 and epilepsy. We hypothesized that adults >65 years with epilepsy would have higher mortality despite adjustment for comorbidity. This retrospective study in a large multicenter New York health system included consecutive patients with epilepsy admitted with COVID-19 between 3/15/2020-5/17/2021. Epilepsy was identified using a validated ICD-CM based case definition. Outcomes were level of respiratory support, ICU admission, and mortality. Chi-square tests, Fisher's exact tests, Student's t-tests and Mann-Whitney U or Kolmogorov Smirnov tests were conducted as appropriate. Multivariable logistic regression models were generated to examine factors associated with mortality. We identified 173 older and 161 younger adults with epilepsy and COVID-19. Median age of older (>65) compared to younger (<65) adults was 74 vs. 52 (p<.001). A larger proportion of older adults died in hospital (35.8% vs. 23%, p=.01). Older adults were less likely to be discharged to home (21.4% vs. 38.5%, p<.001) and more likely to go to a chronic care facility (19.7% vs. 10.0%, p<.001). Ventilation status (35.8% vs. 39.8%, p=.45) or ICU admission rate (34.7% vs. 44.1%, p=.08) were not significantly different between the age groups. Older adults had higher odds of mortality after adjusting for sex, race, language and Charlson Comorbidity Index (CCI) (OR, 2.04;95% CI, 1.22-3.40, p=0.01). Within the over 65 group, increasing years of age (OR 1.07;95% CI 1.02-1.12, p=0.01), and increasing CCI score (OR 1.16, 95% CI 1.01-1.32, p=0.03) were associated with in-hospital mortality while sex, race, and language were not. Our study found higher in-hospital mortality in older compared to younger adults with epilepsy diagnosed with COVID-19. Consistent with prior work, increasing age and increasing number of comorbid diseases was associated with increased odds of mortality, reinforcing the need to communicate risks of multimorbidity and COVID-19 in older adults with epilepsy.

Feasibility pilot of virtual acceptance and commitment therapy (ACT) groups for adolescents with epilepsy

Introduction: The aim of this feasibility pilot was to develop and adapt an ACT group for adolescents with epilepsy for virtual delivery in the context of Covid-19 restriction. The psychological theory and strategies used as part of the group content was based on an ACT approach and its efficacy in chronic health settings. Method: A virtual platform was used to deliver five weekly 1.5 hour sessions to adolescents aged between 12-17 years living with epilepsy. The CompACT and Peds-QL (Teenager) were used to collect quantitative outcome data. We received 18 referrals across two groups;one in July 2020 and one in January 2021. 11 adolescents attended the group in total with the mean age being 15.18 years. Results: Across attendees who completed both pre and post measures (N=2), psychosocial health scores improved by 29%, and psychological flexibility scores improved by 46% following completion of the group. The group was described as 'friendly', 'helpful', 'informing' and a 'sense of community' during qualitative feedback collection. Discussion: The accessibility of the virtual format was suited to the population. Experiential activities were successfully adapted for online delivery. Managing seizure risk virtually was challenging and was mediated by the consideration of an appropriate platform. The reach and communication of group advertisement to appropriate referrers was challenging during busy service periods, to ensure sufficient referrals to make the sessions viable. Conclusion: Moving forward the service will be widening access of the ACT group to referrals from other paediatric clinical health teams within Gwent (July 2021). We will continue with inter-professional delivery to promote psychological working across disciplines and wider dissemination of psychological resource. More formal and systematic appraisal of group efficacy will be key for future development.

International case control study of Sudden Unexpected Death in Epilepsy (SUDEP)

Purpose: To identify factors associated with an increased or decreased risk of SUDEP. Method: The EpiNet study group is undertaking a prospective case-control study, aiming to recruit 200 participants from approximately 40 international centres over four years. Patients with epilepsy from a pre-defined cohort who die of definite or probable SUDEP will be included. Cases must be alive when the cohort is defined. For each case, three true controls and one proxy control will be recruited from the same cohort. A structured telephone interview with the next-of-kin of SUDEP cases will be conducted. Controls will be asked about their epilepsy and lifestyle. Proxy controls will be asked about the control patient they know. Information regarding seizure type and medication, sleeping arrangements, nocturnal supervision, use of seizure-detection devices, socio-economic factors and other health issues will be entered into the EpiNet database. Pathologists' and coroners' data regarding circumstances and cause of death will also be recorded if available. The data will be analysed to identify risk factors for SUDEP. Odds ratios will be calculated using the Mantel-Haenszel method and logistic regression to control for covariates. 200 cases and 800 controls will detect an odds ratio of 1.7 over a control exposure range of 22-65%, with 80% power and 95% confidence level (2-sided). Result: The study is now underway in 8 countries through Asia-Oceania, Europe and North America. COVID-19 has adversely affected case enrolment, and new centres are being sought. Conclusions: SUDEP is second only to stroke as the leading neurological cause of years of potential life lost. The causes remain uncertain. A large prospective case-control study is the best way to determine the extent of the association between specific variables and SUDEP, in particular, those that could be modified to prevent this tragedy. Anyone interested in participating is welcome to contact: epinetadmin@adhb.govt.nz.