Patient and carer perspectives on the use of video consultations in the management of the ketogenic diet for epilepsy.

BACKGROUND: The COVID-19 pandemic resulted in a significant change in the way healthcare was delivered worldwide. During this time, a survey of Ketogenic Dietitians Research Network (KDRN) members found that all respondents expected digital platforms for clinics and/or education to continue post-pandemic. As a follow-up to this, we surveyed views about video consultations (VCs) of patients and carers of those following the ketogenic diet for drug-resistant epilepsy. METHODS: The SurveymonkeyTM survey was distributed on Matthews' Friends and KDRN social media platforms and emailed from five United Kingdom ketogenic diet centers to their patients/carers. RESULTS: Forty eligible responses were received. More than half of the respondents (23, 57.5%) had attended a VC. Eighteen respondents (45%) would like to have VCs for most (categorized as approximately 75%) or all of their consultations. Half as many (9, 22.5%) would not like video consultations. The most common benefits selected were saving travel time (32, 80%), less stress of finding somewhere to park and not having to take time off work (22, 55% each). Twelve (30%) responded that VCs lessened environmental impact. The most common disadvantages selected were not being able to get blood tests/having to make a separate consultation for blood tests (22, 55% overall), not being able to get weight or height checked/having to make a separate consultation for this and it is less personal/preferring face-to-face (17, 42.5% each). Three-quarters (30 respondents) felt it would be very easy or easy to accurately weigh the patient when not attending an in-person consultation. CONCLUSION: Our results suggest that many patients and carers would welcome the option of VCs as well as face-to-face consultations. Where possible and appropriate patients and their families should be offered both options. This is in line with the NHS Long-Term Plan and the NHS response to climate change.

Scoping review of rational polytherapy in patients with drug-resistant epilepsy.

There is a paucity of literature regarding the optimal selection of combination antiseizure medications (ASMs) for drug-resistant epilepsy (DRE). The aim of this scoping review is to evaluate current evidence related to "rational polytherapy" among adults with DRE. Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Reviews (PRISMA-SCr) guidelines, PubMed, ProQuest, CINAHL, and Cochrane databases were searched using DRE- and polytherapy-related keywords. The exclusion criteria applied included: non-English; non-human studies; non-research studies; participants less than 18 years; status epilepticus; ASM monotherapy; and certain ASMs. In Covidence, two researchers independently reviewed articles for inclusion at each phase, with a third resolving conflicts. Data were extracted, with quality appraisal using the Mixed Methods Appraisal Tool (MMAT). Of the 6477 studies imported for screening, 33 studies were included. Clinical, humanistic, and economic outcomes were reported by 26, 12, and one study, respectively. Common efficacy-related clinical outcomes included ≥50% reduction in seizure frequency (n = 14), seizure freedom (n = 14), and percent reduction in seizure frequency (n = 8). Common humanistic outcomes included quality of life (n = 4), medication adherence (n = 2), sleep-related outcomes (n = 2), and physician and patient global assessments (n = 2). The economic study reported quality-adjusted life years. The median MMAT score was 80 (range: 60-100). Two studies referenced the standard definition of DRE, whereas five studies did not specifically define DRE. Gaps in the literature include limited generalizability, minimal reports in pregnancy, and lack of optimal ASM combinations, among others. Strengths of the evidence include addressing a variety of outcomes. Inconsistent definitions of DRE, small sample sizes, and heterogeneity among studies limit the ability to draw meaningful conclusions. Optimal combinations of ASMs for rational polytherapy for DRE is unclear.

TH-208. Development and Evaluation of a Transcutaneous Stimulator for the Treatment of Refractory Epilepsy

Introduction: The design and first results of a transcutaneous electrical stimulator of the vagus nerve for the treatment of Refractory Epilepsy are discussed. Method(s): The device developed is based on the STM32L073CZ microcontroller and can generate fully configurable monopolar or bipolar stimuli, so that the electrical therapy can be adjusted to each patient following the therapeutic strategy designed by their doctor. The start time and duration of each therapeutic session are stored in an internal memory of the device, as well as the instants in which the contact of the electrodes is poor, or the therapeutic session is aborted. In this way, the doctor in charge can review what happened once the information is downloaded to a personal computer. Using 3D printing techniques, a plastic support for the electrodes was developed that allows the automatic adjustment of these to the left ear of the subject undergoing treatment;this ensures placement of the electrodes on the correct ear and proper contact of the electrodes with the skin. The operation of the device is easy, each session starts by pressing a button and ends automatically when the programmed time expires, the intervention of the subject undergoing treatment is minimal and thus stress is avoided. Result(s): 20 prototypes were built and passed technical tests in accordance with IEC 60601-1 and IEC 60601-2-10 standards. The results were satisfactory and thus it is guaranteed that the proposed solution is safe for patients and the techniques used are in the state of the art within this medical technology. The Cuban regulatory body approved a trial with 18 humans to test the effectiveness of the device developed;each patient will be under treatment for nine months, but not all began simultaneously due to restrictions put in place by the COVID-19 pandemic. Electrical stimulation was set as follows: bipolar square pulses of 200 microseconds duration at 25 Hz;three 60-minute sessions per day. A patient is considered as treatment's responder monthly crisis frequency decrease more than 50% that he suffered before starting treatment. To date, six patients have completed the trial, five with significant improvement. The other twelve patients are in treatment and after the third month the Monthly Seizure Frequency has decreased in all of them. Conclusion(s): The proposed solution has been effective in the first six patients ending the trial. Without concluding the study, the proposed solution seems an outstanding therapeutic solution. Copyright © 2022

MeRIT Project: Scoping review of rational polytherapy in patients with drug resistant epilepsy

Introduction: There is a paucity of literature regarding the optimal selection of combination anti-seizure medications (ASMs) for drug resistant epilepsy (DRE). The aim of this scoping review is to evaluate current evidence related to "rational polytherapy" among adults with DRE. Research Question or Hypothesis: What is the current evidence of clinical and health-related humanistic and economic outcomes of rational polytherapy with ASMs in DRE? If DRE is mentioned, is the appropriate definition applied? What are the current gaps? Study Design: Scoping review Methods: Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Reviews (PRISMA-SCr) guidelines, PubMed, ProQuest, CINAHL, and Cochrane databases were searched using DRE- and polytherapy-related keywords. The exclusion criteria applied included: non-English;non-human studies;non-research studies;participants less than 18 years;status epilepticus;ASM monotherapy;and certain ASMs. In Covidence, two researchers independently reviewed articles for inclusion at each phase, with a third resolving conflicts. Data were extracted, with quality appraisal using the Mixed Methods Appraisal Tool (MMAT). Result(s): Of the 6477 studies imported for screening, 33 studies were included. Clinical, humanistic, and economic outcomes were reported by 26, 12, and one study, respectively. Common efficacyrelated clinical outcomes included >=50% reduction in seizure frequency (n=14), seizure freedom (n=13), and percent reduction in seizure frequency (n=8). Common humanistic outcomes included quality of life (n=4), medication adherence (n=2), sleep-related outcomes (n=2), and physician and patient global assessments (n=2). The economic study reported quality-adjusted life years. Two studies referenced the standard definition of DRE. Five studies did not specifically define DRE. Gaps in the literature include limited generalizability, minimal reports in pregnancy, and lack of optimal ASM combinations. Conclusion(s): Strengths of the evidence include addressing a variety of outcomes. Inconsistent definitions of DRE, small sizes, and heterogeneity among studies limit the ability to draw meaningful conclusions. Optimal combinations of ASMs for rational polytherapy for DRE is unclear.

Hemiconvulsion-Hemiplegia-Epilepsy Syndrome in the Setting of COVID-19 Infection and Multisystem Inflammatory Syndrome in Children

Objective: To present a case of Hemiconvulsion-Hemplegia-Epilepsy (HHE) Syndrome in a child with COVID-19 infection and Multisystem Inflammatory Syndrome in Children (MIS-C). Background: HHE Syndrome is a rare pediatric epilepsy syndrome that presents with prolonged unilateral convulsive status epilepticus in the setting of fever, followed by hemiparesis, unilateral hemispheric swelling and atrophy, and the development of epilepsy. Though it was first described over six decades ago, the pathophysiology is still poorly understood with multiple factors contributing, including hyperthermia, inflammation, and cytotoxic edema from prolonged ictal activity. Prognosis is variable, from the resolution of hemiplegia and seizures to permanent hemiparesis and refractory epilepsy. Design/Methods: This is a case report based on a chart review. Results: The patient is a 2-year-old boy with a history of one prior complex febrile seizure who presented with greater than one hour of convulsive status epilepticus in the setting of fever. The patient had a generalized tonic-clonic seizure with more prominent convulsions on the right side. The patient required intubation and was initially given multiple anti-seizure loads though continued to have persistent electrographic and electroclinical seizures. EEG showed lefthemispheric high amplitude spike/polyspike and wave discharges. The patient required continuous midazolam infusion with eventual control of seizures on levetiracetam, phenobarbital, and clobazam. The examination was notable for persistent right-sided hemiparesis with gradual improvement. MRI brain without contrast revealed T2 signal abnormality and restricted diffusion diffusely throughout the left cerebral hemisphere. Infectious workup was significant for positive COVID-19 PCR and elevated inflammatory markers, consistent with MIS-C. Conclusions: Our patient had prolonged focal convulsive status epilepticus in the setting of acute febrile illness secondary to COVID-19 and MIS-C leading to hemiparesis and diffuse left cerebral hemisphere edema on MRI brain consistent with HHE syndrome. More research is needed to elucidate further HHE syndrome's pathophysiology and assess long-term outcomes in patients with HHE syndrome.

Telemedicine- versus outpatient-based initiation and management of ketogenic diet therapy in children with drug-resistant epilepsy during the COVID-19 pandemic.

INTRODUCTION: Initiation of ketogenic diet therapies (KDT) for pediatric epilepsy is usually done on an inpatient basis and the diet is managed during clinical appointments following a protocol of visits and routine tests. Because of the 2019 coronavirus disease (COVID-19) pandemic and the associated lock-down measures, we switched from outpatient to telemedicine-based KDT initiation. OBJECTIVE: To explore the feasibility, effectiveness, and safety of online KDT initiation and follow-up by comparing a group of children with drug-resistant epilepsy that was managed by telemedicine compared to a group that was treated on an outpatient basis. MATERIALS AND METHODS: An observational study was conducted in two groups of patients with drug-resistant epilepsy who initiated KDT and were followed up with an online versus an outpatient modality by the interdisciplinary KDT team of Hospital Pediatria JP Garrahan in Buenos Aires, Argentina. Dietary compliance, ketosis, retention rate, adverse effects, number of contacts, and clinical outcome were evaluated at 1, 3, and 6 months on the diet. RESULTS: Overall, 37 patients were included, of whom 18 started the KD by telemedicine and 19 on an outpatient basis. Minimum follow-up of the patients was 6 months. All patients received the classic ketogenic diet. No statistical differences between the two groups regarding efficacy and safety of the diet were found. CONCLUSIONS: Our results support the feasibility and safety of initiating and management of KDT by telemedicine. Patients and their families should be carefully selected in order to guarantee a good outcome.

Suspend or amend? Randomized controlled trial on neuropsychological rehabilitation for epilepsy: A COVID-19 impact.

COVID-19 caused devastating effects of human loss and suffering along with disruption in clinical research, forcing reconceptualization and modification of studies. This paper attempts to outline the steps followed and detail the modifications undertaken to deal with the impacts of the pandemic on the first ongoing randomized controlled trial on effectiveness of neuropsychological rehabilitation in adult patients with drug-resistant epilepsy in India. All modifications were based on evolving guidelines and circumstantial context and were planned, reviewed and approved by important stakeholders. Results obtained from the trial need to be interpreted and analysed within this context. These modifications have implications for wider outreach of neuropsychology services in India.

Randomized controlled trial on neuropsychological rehabilitation for patients with drug refractory epilepsy: Challenges, adaptations & findings

Purpose: Reviews of neuropsychological rehabilitation literature in epilepsy outnumber the original studies with one Randomized Controlled Trial (RCT) reported till date. A home-based neuropsychological rehabilitation program was developed for patients with Drug Refractory Epilepsy (DRE) [Post-Operative (PO) & Not Cleared for Surgery (NCS)]. The COVID-19 pandemic posed challenges of follow-up and tele- assessment. Adaptations were made to the ongoing study and solutions were found based on available literature and focus group discussions with experts in the field of neuropsychology and epileptology. The efficacy was studied. Method: 27 consenting adults with DRE were recruited in a single blind RCT (CTRI/2019/10/021777) with 14 patients in the Intervention (IG) (PO = 13, NCS = 1), and 13 in the Treatment As Usual (TAU) (PO = 11, NCS = 2) groups. They were of any gender, aged 18-45 years diagnosed with DRE atleast 1 year back, with minimum primary level of education, IQ > 80, having an available primary caregiver. At 3 months, reasons for non-compliance to rehabilitation due to COVID-19 were noted and a booster session was given. Pre-post neuropsychological assessment included Auditory Verbal Learning Test and Everyday Memory Questionnaire (EMQ). All follow-ups were done through tele-assessment at 6 months and coded for validity on a 3-point scale. The 6-week neuropsychological rehabilitation program included psychoeducation, compensatory training and cognitive retraining aimed at improving memory. The booster session focused on internal and external aids. Result: Themes of non-compliance included 1) Non-availability of time due to shift to virtual work/study 2) Increased household work. Mann-Whitney test of the absolute differences of the test scores (follow-up score- baseline score) between two groups revealed significant differences in immediate recall (P = 0.002), delayed recall (p <0.001), long term retention (P = 0.024), patient reported EMQ (p <0.001) and caregiver reported EMQ (p <0.001) with IG showing improvement. Conclusions: Despite challenges of the pandemic, efficacy of the rehabilitation was observed.

[Features of the patient management with traumatic brain injury]. / Osobennosti vedeniya patsientov s cherepno-mozgovoi travmoi.

The aim of our study was to consider features of pathogenesis, diagnosis and therapy of traumatic brain injury (TBI) from the viewpoint of neurologist. The mechanisms of emerging injury of the central nervous system, including neuro-inflammation and oxidative stress in patients with TBI, and correlations between clinical manifestations and severity of TBI are discussed. Special attention is paid to the description of certain TBI consequences, e.g. structural drug-resistant epilepsy and post-traumatic stress disorder. We provide evidence for difficulties and lesser availability of rehabilitation programs to patients with TBI during COVID-19 pandemics. One should mention a need for administration of Mexidol as the antioxidant/antihypoxant drug into complex therapy of TBI in such patients. In the period of COVID-19 pandemics, the role of neurologist in management of TBI patients still increases, especially, at the outpatient treatment stage, and when carrying out therapy and medical rehabilitation programs.

Evaluation of E-Health Applications for Paediatric Patients with Refractory Epilepsy and Maintained on Ketogenic Diet.

E-health technologies improve healthcare quality and disease management. The aim of this study was to develop a ketogenic diet management app as well as a website about this dietary treatment and to evaluate the benefits of giving caregivers access to various web materials designed for paediatric patients with refractory epilepsy. Forty families participated in the questionnaire survey, from January 2016 to March 2016. All caregivers were exposed to paper-based materials about the ketogenic diet, whereas only 22 received the app, called KetApp, and videos produced by dieticians. Caregivers with free access to web materials were more satisfied than the others with the informative material provided by the centre (p ≤ 0.001, Mann-Whitney test). Indeed, they showed a better attitude towards treatment, and they became more aware of dietary management in comparison to the control group (p ≤ 0.001). Moreover, caregivers provided with web materials were stimulated to pursue the treatment (p = 0.002) and to introduce it to their children and other people (p = 0.001). Additionally, caregivers supplied with web materials were more willing to help other families in choosing the ketogenic diet (p = 0.004). Overall, these findings indicate that web materials are beneficial for caregivers of paediatric patients with refractory epilepsy in our centres. Thus, the use of e-health applications could be a promising tool in the daily aspects of ketogenic diet management, and it is especially of value in the attempt to start or maintain the diet during the ongoing COVID-19 pandemic crisis.

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.

Telemedicine, drug-resistant epilepsy, and ketogenic dietary therapies: A patient survey of a pediatric remote-care program during the COVID-19 pandemic.

OBJECTIVE: The purpose of this study was to assess parent satisfaction with the management of ketogenic diet therapies (KDTs) through telemedicine using WhatsApp as the main tool. METHODS: Parent satisfaction was longitudinally evaluated through questionnaires. The survey was developed with Google Questionnaire forms and sent via WhatsApp. The questionnaire consisted of 13 items concerning the management of KDTs using telemedicine in the context of the coronavirus disease 2019 (COVID-19) pandemic. Our population of patients has limited financial resources and low levels of education. Given that many families did not have either computers or WIFI, or any other access to information or communication technology, WhatsApp was chosen as a tool as it was available on the cell phones of all families and the professionals. RESULTS: Our survey showed that 96.3% of the parents were satisfied with the management of KDTs through telemedicine. The main benefits observed were the possibility of continuing treatment during the COVID-19 pandemic and the ease of accessing the professional team from the comfort of their home. Overall, 72.2% of the families would recommend using telemedicine for KDTs in any situation regardless of the pandemic. None of the families reported that they would recommend against treatment by telemedicine. The availability of a social support network (parents WhatsApp group) coordinated by professionals from the KDT team was considered to be useful by most respondents (90%). CONCLUSIONS: Our study suggests that management of children with DRE on KDTs through telemedicine is feasible, well accepted by the families, and probably as safe as conventional medicine. WhatsApp may be an interesting telemedicine tool to start and maintain KDTs.

Severe psychological distress among patients with epilepsy during the COVID-19 outbreak in southwest China.

OBJECTIVE: To compare the severity of psychological distress between patients with epilepsy and healthy controls during the COVID-19 outbreak in southwest China, as well as identify potential risk factors of severe psychological distress among patients with epilepsy. METHODS: This cross-sectional case-control study examined a consecutive sample of patients older than 15 years treated at the epilepsy center of West China Hospital between February 1 and February 29, 2020. As controls, sex- and age-matched healthy visitors of inpatients (unrelated to the patients) were also enrolled during the same period. Data on demographics and attention paid to COVID-19 were collected by online questionnaire, data on epilepsy features were collected from electronic medical records, and psychological distress was evaluated using the 6-item Kessler Psychological Distress Scale (K-6). Potential risk factors of severe psychological distress were identified using multivariate logistic regression. RESULTS: The 252 patients and 252 controls in this study were similar along all demographic variables except family income. Patients with epilepsy showed significantly higher K-6 scores than healthy controls and spent significantly more time following the COVID-19 outbreak (both P < .001). Univariate analyses associated both diagnosis of drug-resistant epilepsy and time spent paying attention to COVID-19 with severe psychological distress (defined as K-6 score >12; both P ≤ .001). Multivariate logistic regression identified two independent predictors of severe psychological distress: time spent paying attention to COVID-19 (odds ratio [OR] = 1.172, 95% confidence interval [CI] = 1.073-1.280) and diagnosis of drug-resistant epilepsy (OR = 0.283, 95% CI = 0.128-0.623). SIGNIFICANCE: During public health outbreaks, clinicians and caregivers should focus not only on seizure control but also on mental health of patients with epilepsy, especially those with drug-resistant epilepsy. K-6 scores > 12 indicate severe psychological distress. This may mean, for example, encouraging patients to engage in other activities instead of excessively following media coverage of the outbreak.