Efficacy and tolerability of levetiracetam in people with and without intellectual disabilities: A naturalistic case control study.

INTRODUCTION: People with Intellectual Disabilities (PwID) are twenty times more likely than general population to have epilepsy. Guidance for prescribing antiseizure medication (ASM) to PwID is driven by trials excluding them. Levetiracetam (LEV) is a first-line ASM in the UK. Concerns exist regarding LEV's behavioural and psychological adverse effects, particularly in PwID. There is no high-quality evidence comparing effectiveness and adverse effects in PwID to those without, prescribed LEV. METHODS: Pooled casenote data for patients prescribed LEV (2000-2020) at 18 UK NHS Trusts were analysed. Demographics, starting and maximum dose, adverse effects, dropouts and seizure frequency between ID (mild vs. moderate-profound (M/P)) and general population for a 12-month period were compared. Descriptive analysis, Mann-Whitney, Fisher's exact and logistic regression methods were employed. RESULTS: 173 PwID (mild 53 M/P 120) were compared to 200 without ID. Mean start and maximum dose were similar across all groups. PwID (Mild & M/P) were less likely to withdraw from treatment (P = 0.036). No difference was found between ID and non-ID or between ID groups (Mild vs M/P) in LEV's efficacy i.e. >50 % seizure reduction. Significant association emerged between ID severity and psychiatric adverse effects (P = 0.035). More irritability (14.2 %) and aggression (10.8 %) were reported in M/P PwID. CONCLUSION: PwID and epilepsy have high rates of premature mortality, comorbidities, treatment resistance and polypharmacy but remain poorly researched for ASM use. This is the largest studied cohort of PwID trialled on LEV compared to general population controls. Findings support prescribing of LEV for PwID as a first-line ASM.

Efficacy and tolerability of Brivaracetam in people with intellectual disability compared to those without intellectual disability.

INTRODUCTION: In England, nearly a quarter of people with intellectual disability (PwID) have epilepsy. Though 70 % of PwID have pharmaco-resistant seizures only 10 % are prescribed anti-seizure medication (ASMs) licenced for pharmaco-resistance. Brivaracetam (BRV) licenced in 2016 has had nine post-marketing studies involving PwID. These studies are limited either by lack of controls or not looking at outcomes based on differing levels of ID severity. This study looks at evidence comparing effectiveness and side-effects in PwID to those without ID prescribed Brivaracetam (BRV). METHODS: Pooled case note data for patients prescribed BRV (2016-2022) at 12 UK NHS Trusts were analysed. Demographics, starting and maximum dose, side-effects, dropouts and seizure frequency between ID (mild vs. moderate-profound (M/P)) and general population for a 12-month period were compared. Descriptive analysis, Mann-Whitney, Fisher's exact and logistic regression methods were employed. RESULTS: 37 PwID (mild 17 M/P 20) were compared to 102 without ID. Mean start and maximum dose was lower for PwID than non-ID. Mean maximum dose reduced slightly with ID severity. No difference was found between ID and non-ID or between ID groups (Mild vs M/P) in BRV's efficacy i.e. >50 % seizure reduction or tolerability. Mental and behavioural side-effects were more prevalent for PwID (27.0 % ID, 17.6 % no ID) but not significantly higher (P = 0.441) or associated with ID severity (p = 0.255). CONCLUSION: This is the first study on BRV, which compares ID cohorts with differing severity and non-ID. Efficacy, tolerability and side-effects reported are similar across differing ID severity to those with no ID.

At home EEG monitoring technologies for people with epilepsy and intellectual disabilities: A scoping review.

BACKGROUND: Conducting electroencephalography in people with intellectual disabilities (PwID) can be challenging, but the high proportion of PwID who experience seizures make it an essential part of their care. To reduce hospital-based monitoring, interventions are being developed to enable high-quality EEG data to be collected at home. This scoping review aims to summarise the current state of remote EEG monitoring research, potential benefits and limitations of the interventions, and inclusion of PwID in this research. METHODS: The review was structured using the PRISMA extension for Scoping Reviews and the PICOS framework. Studies that evaluated a remote EEG monitoring intervention in adults with epilepsy were retrieved from the PubMed, MEDLINE, Embase, CINAHL, Web of Science, and ClinicalTrials.gov databases. A descriptive analysis provided an overview of the study and intervention characteristics, key results, strengths, and limitations. RESULTS: 34,127 studies were retrieved and 23 were included. Five types of remote EEG monitoring were identified. Common benefits included producing useful results of comparable quality to inpatient monitoring and patient experience. A common limitation was the challenge of capturing all seizures with a small number of localised electrodes. No randomised controlled trials were included, few studies reported sensitivity and specificity, and only three considered PwID. CONCLUSIONS: Overall, the studies demonstrated the feasibility of remote EEG interventions for out-of-hospital monitoring and their potential to improve data collection and quality of care for patients. Further research is needed on the effectiveness, benefits, and limitations of remote EEG monitoring compared to in-patient monitoring, especially for PwID.

Risk characteristics of alcohol and/or drug misuse in repeat emergency department attendees for seizures: a case-control study.

BACKGROUND: There is a bi-directional relationship between seizures and substance misuse, i.e., alcohol and recreational drugs. Seizures and substance misuse are recognised separately to influence increased emergency department (ED) admissions and early death. There is however no understanding of the cumulative influence of these matters on repeat ED attenders for seizures esp. as a third are likely to re-attend within the year. This case-control study compares the characteristics of people with substance misuse to those without substance misuse presenting recurrently with seizures to the ED. METHODS: From a single ED serving a rural population in the Southwest of England, data of all people presenting more than once with a seizure over a 4-year period were examined. The diagnosis of alcohol or drug misuse, deaths, demographic characteristics, and service use were captured. RESULTS: Of 450 repeat attenders, 95 had a recorded history of alcohol and/or drug problems. Those with substance misuse had double the mortality when adjusted for age and gender compared to those without. They were also more likely to be male, younger in age, have mental health issues, live in socially deprived neighborhoods, not take anti-seizure medications and not have had a specialist review in epilepsy services in the previous year. Nearly a quarter of those with addiction issues died in the 4-year period. DISCUSSION: Service provision for this vulnerable group may need to be modelled along different lines to traditional approaches, such as an assertive outreach community-based service as provided for chronic psychiatric and addiction management.

Improving nocturnal event monitoring in people with intellectual disability in community using an artificial intelligence camera.

There is higher prevalence of epilepsy and SUDEP in people with intellectual disability (PwID) compared to general population. Accurate seizure recording particularly at night can be challenging in PwID. Neuro Event Labs seizure monitoring (Nelli) uses high-quality video based artificial intelligence to detect and record possible nocturnal seizures. This study looks to evaluate the clinical utility and acceptability of Nelli in PwID and epilepsy. Family/carers of PwID and drug resistant epilepsy with suspicions of nocturnal seizures who had not tolerated routine or ambulatory EEGs were invited to evaluate Nelli. Relevant demographics and clinical characteristics were collected. Nelli's impact, it's facilitators, barriers and feedback quality was captured from patient and professional stakeholders. Quantitative and thematic analysis was undertaken. Fifteen PwID and epilepsy and four health professionals were involved. Nelli recorded 707 possible seizure events across the study cohort of which 247 were not heard or recognised by carers. Carers recorded 165 episodes of 'restless' or "seizure behaviour" which the Nelli did not deem to be seizures. There was 93% acceptability. Thematic analysis revealed three broad themes of device acceptability, result implementation and possible seizure recognition ability. Nelli allowed for improved communication and care planning in a hitherto difficult to investigate population.

Analysing patient-generated data to understand behaviours and characteristics of women with epilepsy of childbearing years: A prospective cohort study.

BACKGROUND: Women with epilepsy (WWE) are vulnerable in pregnancy, with increased risks to mother and baby including teratogenic risks, especially from valproate. The free EpSMon mobile-phone app allows self-monitoring to afford patient-centred feedback on seizure related risks, such as sudden death in epilepsy (SUDEP) to its users. We sought to generate insights into various seizure related risks and its treatments in WWE of childbearing age (16 to 60 years ) using EpSMon. METHODS: The study utilizes a prospective real-world cohort of 5.5 years. Patient reported data on demographics, medication taken, diagnoses, seizure types and recognised biological, psychological, and social factors of seizure related harm were extracted. Data was stratified according to frequent and infrequent users and those scoring lower and higher risk scores. Multivariate logistic regression and different statistical tests were conducted. FINDINGS: Data from 2158 WWE of childbearing age encompassing 4016 self-assessments were analysed. Overall risk awareness was 25.3% for pregnancy and 54.1% for SUDEP. Frequent users were more aware of pregnancy risks but not of SUDEP. Repeated EpSMon use increased SUDEP awareness but not pregnancy risks. Valproate was used by 11% of WWE, ranging from 6.5% of younger to 31.5% of older women. CONCLUSIONS: The awareness to risks to pregnancy, SUDEP and valproate is low. Valproate is being used by a significant minority. It is imperative risk communication continues for WWE based on their individual situation and need. This is unlikely to be delivered by current clinical models. Digital solutions hold promise but require work done to raise implementation and acceptability.

Remote Electroencephalography Monitoring of Epilepsy in Adults: Protocol for a Scoping Review.

BACKGROUND: Electroencephalography (EEG) monitoring is a key tool in diagnosing and determining treatment for people with epilepsy; however, obtaining sufficient high-quality data can be a time-consuming, costly, and inconvenient process for patients and health care providers. Remote EEG monitoring has the potential to improve patient experience, data quality, and accessibility for people with intellectual or developmental disabilities. OBJECTIVE: The purpose of this scoping review is to provide an overview of the current research evidence and knowledge gaps regarding the use of remote EEG monitoring interventions for adults with epilepsy. METHODS: The PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) and Population, Intervention, Comparator, Outcome, and Study (PICOS) frameworks will be used to structure the review. Searches will be conducted in 6 databases (PubMed, MEDLINE, Embase, CINAHL, Web of Science, and ClinicalTrials.gov) for articles published in English that evaluate at least one out-of-hospital EEG monitoring intervention or device for adults with epilepsy. A descriptive analysis will be conducted to summarize the results; key themes and gaps in the literature will be discussed. RESULTS: Results will be included in the scoping review, which will be submitted for publication by April 2022. CONCLUSIONS: This scoping review will summarize the state of the field of remote EEG monitoring interventions for adults with epilepsy and provide an overview of the strengths, weaknesses, and gaps in the research. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/33812.

Seizures and emergency department: characteristics and factors of repeat adult attendees.

BACKGROUND: To identify risk factors and characteristics for the repeated attendance at an emergency department (ED) following a seizure. METHODS: A retrospective cohort study was conducted using non-identifiable data of individuals attending ED at least twice between 2015 and 2018, following a seizure. Data were drawn from the patient administration system of an English rural medium-sized teaching district general hospital emergency department (ED), serving a population of 566,000 people. It was analysed for bio-psycho-social features associated with repeat attendances. RESULTS: Of 3522 seizure-related attendances in the four years, 450 people were identified to be repeaters attending on two or more occasions (range 2-12). Just over a quarter (27%) were 18-29 years old. Higher likelihood of re-attendance was associated with social deprivation and no fixed abode. Mental illness was a significant co-morbidity influencing repeat attendances. Nearly half (47%) had no recorded anti-seizure medication (ASM). Three fifth (60%) were on general medication and a quarter (25%) on psychotropics. Nearly a quarter (22%) had alcohol and recreational drug concerns. Just over a quarter (28%) had no previous epilepsy diagnosis. Nearly a fifth (n = 85, 19%) died during the study period. CONCLUSION: People who present repeatedly with seizures at ED are at significant risk of death over a four-year period and require pro-active clinical follow-up. People who are homeless or from socially deprived areas are over-represented in this group, as are those with alcohol problems, co-morbid mental health conditions and compliance issues. This suggests enhanced targeted intervention for this cohort is needed.

A Review of Network and Computer Analysis of Epileptiform Discharge Free EEG to Characterize and Detect Epilepsy.

Objectives. There is emerging evidence that network/computer analysis of epileptiform discharge free electroencephalograms (EEGs) can be used to detect epilepsy, improve diagnosis and resource use. Such methods are automated and can be performed on shorter recordings of EEG. We assess the evidence and its strength in the area of seizure detection from network/computer analysis of epileptiform discharge free EEG. Methods. A scoping review using Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidance was conducted with a literature search of Embase, Medline and PsychINFO. Predesigned inclusion/exclusion criteria were applied to selected articles. Results. The initial search found 3398 articles. After duplicate removal and screening, 591 abstracts were reviewed, 64 articles were selected and read leading to 20 articles meeting the requisite inclusion/exclusion criteria. These were 9 reports and 2 cross-sectional studies using network analysis to compare and/or classify EEG. One review of 17 reports and 10 cross-sectional studies only aimed to classify the EEGs. One cross-sectional study discussed EEG abnormalities associated with autism. Conclusions. Epileptiform discharge free EEG features derived from network/computer analysis differ significantly between people with and without epilepsy. Diagnostic algorithms report high accuracies and could be clinically useful. There is a lack of such research within the intellectual disability (ID) and/or autism populations, where epilepsy is more prevalent and there are additional diagnostic challenges.

The impact of smoking cessation on multiple sclerosis disease progression.

The negative impact of smoking in multiple sclerosis is well established; however, there is much less evidence as to whether smoking cessation is beneficial to progression in multiple sclerosis. Adults with multiple sclerosis registered on the United Kingdom Multiple Sclerosis Register (2011-20) formed this retrospective and prospective cohort study. Primary outcomes were changes in three patient-reported outcomes: normalized Multiple Sclerosis Physical Impact Scale (MSIS-29-Phys), normalized Multiple Sclerosis Walking Scale (MSWS-12) and the Hospital Anxiety and Depression Scale (HADS). Time to event outcomes were clinically significant increases in the patient-reported outcomes. The study included 7983 participants; 4130 (51.7%) of these had ever smoked, of whom 1315 (16.5%) were current smokers and 2815/4130 (68.2%) were former smokers. For all patient-reported outcomes, current smokers at the time of completing their first questionnaire had higher patient-reported outcomes scores indicating higher disability compared to those who had never smoked (∼10 points difference in MSIS-29-Phys and MSWS-12; 1.5-1.8 points for HADS-Anxiety and HADS-Depression). There was no improvement in patient-reported outcomes scores with increasing time since quitting in former smokers. Nine hundred and twenty-three participants formed the prospective parallel group, which demonstrated that MSIS-29-Phys [median (IQR) 5.03 (3.71, 6.34)], MSWS-12 [median (IQR) 5.28 (3.62, 6.94)] and HADS-Depression [median (IQR) 0.71 (0.47, 0.96)] scores worsened over a period of 4 years, whereas HADS-Anxiety remained stable. Smoking status was significant at Year 4; current smokers had higher MSIS-29-Phys and HADS-Anxiety scores [median (IQR) 3.05 (0.22, 5.88) and 1.14 (0.52, 1.76), respectively] while former smokers had a lower MSIS-29-Phys score of -2.91 (-5.03, -0.79). A total of 4642 participants comprised the time to event analysis. Still smoking was associated with a shorter time to worsening event in all patient-reported outcomes (MSIS-29-Phys: n = 4436, P = 0.0013; MSWS-12: n = 3902, P = 0.0061; HADS-Anxiety: n = 4511, P = 0.0017; HADS-Depression: n = 4511, P < 0.0001). Worsening in motor disability (MSIS-29-Phys and MSWS-12) was independent of baseline HADS-Anxiety and HADS-Depression scores. There was no statistically significant difference in the rate of worsening between never and former smokers. When smokers quit, there is a slowing in the rate of motor disability deterioration so that it matches the rate of motor decline in those who have never smoked. This suggests that smoking cessation is beneficial for people with multiple sclerosis.

Frontotemporal Dementia with Parkinsonism and Epilepsy Associated with VGKC Antibodies: Case Report and Literature Review.

Antibodies directed against the voltage-gated potassium channel complex (anti-VGKCs) are implicated in several autoimmune conditions including limbic encephalitis and epilepsy. However, emerging evidence suggests that only specific subtypes of anti-VGKCs are pathogenic. We present the case of a 55-year-old man who initially presented with focal unaware seizures and behavioural changes mimicking anti-VGKC-seropositive encephalitis that further progressed to parkinsonism with evidence of frontotemporal dementia and pre-synaptic dopaminergic deficit. Aggressive treatment with immunotherapy was ineffective, and antibody subtyping later revealed the anti-VGKC antibodies to be negative for leucine-rich glioma-associated 1 (LGI1) and contactin-associated protein-like 2 (CASPR2) - the two known pathogenic subtypes. The clinical relevance of so-called "double-negative" anti-VGKCs (i.e., those not directed towards LGI1 or CASPR2) has been called into question in recent years, with evidence to suggest they may be clinically insignificant. Our case emphasises the importance of antibody subtyping in cases of anti-VGKC seropositivity; negative results, particularly when combined with a poor response to immunotherapy, should prompt a rapid reconsideration of the working diagnosis.

Sudden Unexpected Death in Epilepsy (SUDEP) and seizure safety: Modifiable and non-modifiable risk factors differences between primary and secondary care.

INTRODUCTION: The SUDEP and Seizure Safety Checklist ("Checklist") is a risk factors Checklist based around a person with epilepsy (PWE) demographics, seizure, physical, psychological, and lifestyle issues. The Checklist provides a cumulative picture of current risk when applied to a PWE. This study compares and contrasts risk factors of PWE in primary versus secondary care. METHODS: The Checklist was applied to all PWE registered in four primary care practices in central Cornwall UK (pop: 120,000). Individual, modifiable, non-modifiable, and total risk factors and scores were compared between PWE open to secondary care and those not. Statistical tests were used to calculate significance of individual risk factors in primary or secondary care, to compare the total risk scores between care settings and to find the frequency differences of each risk factor between primary practices. RESULTS: People with total and non-modifiable risk scores were higher in secondary care (both p < 0.001). However, modifiable risk scores were higher in primary care (p < 0.001). Psychiatric concerns were the most prevalent modifiable risk factor in primary care. There were significant differences in the risk profiles between all four primary care practices. CONCLUSION: This study highlights that there is a lack of clarity on who is referred to secondary care and when. There needs to be an evidence-based system to allow for a bidirectional flow of PWE considering their fluctuating risk. The Checklist can be a decision support tool to enable this.

EEG Markers in Emotionally Unstable Personality Disorder-A Possible Outcome Measure for Neurofeedback: A Narrative Review.

Objectives. There is growing evidence for the use of biofeedback (BF) in affective disorders, dissocial personality disorder, and in children with histories of abuse. Electroencephalogram (EEG) markers could be used as neurofeedback in emotionally unstable personality disorder (EUPD) management especially for those at high risk of suicide when emotionally aroused. This narrative review investigates the evidence for EEG markers in EUPD. Methods. PRISMA guidelines were used to conduct a narrative review. A structured search method was developed and implemented in collaboration with an information specialist. Studies were identified via 3 electronic database searches of MEDLINE, Embase, and PsycINFO. A predesigned inclusion/exclusion criterion was applied to selected papers. A thematic analysis approach with 5 criteria was used. Results. From an initial long list of 5250 papers, 229 studies were identified and screened, of which 44 met at least 3 of the predesigned inclusion criteria. No research to date investigates EEG-based neurofeedback in EUPD. A number of different EEG biomarkers are identified but there is poor consistency between studies. Conclusions. The findings heterogeneity may be due to the disorder complexity and the variable EEG related parameters studied. An alternative explanation may be that there are a number of different neuromarkers, which could be clustered together with clinical symptomatology, to give new subdomains. Quantitative EEGs in particular may be helpful to identify more specific abnormalities. EEG standardization of neurofeedback protocols based on specific EEG abnormalities detected may facilitate targeted use of neurofeedback as an intervention in EUPD.

Eslicarbazepine acetate response in intellectual disability population versus general population.

BACKGROUND: A quarter of people with intellectual disability (ID) have epilepsy, compared to approximately one in a hundred across the general population. Evidence for the safe and effective prescribing of antiepileptic drugs (AEDs) for those with ID is, however, limited. AIMS OF STUDY: This study seeks to strengthen the research evidence around Eslicarbazepine Acetate (ESL), a new AED, by comparing response of individuals with ID to those from the general population who do not have ID. METHODS: A single data set was created through retrospective data collection from English and Welsh NHS Trusts. The UK-based Epilepsy Database Research Register (Ep-ID) data collection and analysis method were used. RESULTS: Data were collected for 93 people (36 ID and 57 'no ID'). Seizure improvement of '>50%' was higher at 12 months for 'no ID' participants (56%), compared to ID participants (35%). Retention rates were slightly higher for those with ID (56% compared to 53%). Neither difference was significant. CONCLUSIONS: Tolerance and Efficacy for ID and 'no ID' people in our data set were similar. Seizure improvement and retention rates were slightly lower than that found in other European data sets, but findings strengthen the evidence for the use of ESL in the ID population.

Myotonic dystrophy: a cause of acute breathlessness not to be missed.

Myotonic dystrophy type 1 (DM1), the most common muscular dystrophy in adults, is an autosomal dominant disorder with a wide phenotypic spectrum ranging from oligosymptomatic forms to a life-threatening, multisystem disease. People with DM1 overall have a reduced life expectancy, mainly due to respiratory or cardiac causes. There is no cure but prompt, appropriate symptom management is essential to limit disease-related complications. We present a case of DM1, unrecognised when the patient presented with recurrent type 2 respiratory failure, and initially misdiagnosed as Guillain-Barré syndrome. This misdiagnosis subsequently led to unnecessary investigation and treatment before further detailed neurological examination and collateral family history gave the diagnosis. This case highlights the importance of considering a chronic neuromuscular disorder in patients presenting with acute respiratory failure and an unusual pattern of weakness.

European perspective of perampanel response in people with Intellectual Disability.

BACKGROUND: Epilepsy prevalence is over 20% for those with ID. It is difficult to diagnose and treat and more likely to be treatment resistant. The evidence informing prescribing is sparse, particularly for new drugs such as perampanel (PMP). AIMS OF THE STUDY: This study seeks to strengthen the research evidence regarding PMP for people with ID by pooling information from two isolated and separately conducted studies: the UK-based Epilepsy Database Register (Ep-ID) and the data from the Kempenhaeghe clinic in the Netherlands. METHODS: A single data set of comparable data was created and analysed under agreement and supervision of a UK statistician. RESULTS: Seizure reduction within twelve months was evident in 62% of Dutch and 47% of UK patients. Retention rates were higher for those in the UK (P = .01) and for patients with moderate to profound ID, whilst side effects were more prominent in the Dutch cohort. CONCLUSIONS: Comparable rates of seizure reduction are in line with estimates for non-ID patients, adding to the evidence suggesting that PMP has a similar impact on those with ID. Taking a European perspective and sharing data across centres can help strengthen the evidence for prescribing antiepileptic drugs in the ID population.

Lacosamide in the general population and in people with intellectual disability: Similar responses?

PURPOSE: Epilepsy prevalence is significantly higher in people with Intellectual Disability (ID) compared to people with epilepsy (PWE) from the general population. Increased psychological and behavioural problems, healthcare costs, morbidity, mortality and treatment resistance to antiepileptic drugs (AEDs) is associated with epilepsy in ID populations. Prescribing AEDs for PWE and ID is challenging and influenced heavily by studies conducted with the general population. Our study compares Lacosamide (LCM) response for the ID population to those from the general population; using data from an UK based epilepsy database register (EP ID/PDD AED Register). METHODS: Pooled retrospective case notes data for PWE prescribed LCM at 11 UK NHS Trusts were analysed. Participants were classified as per WHO guidance into groups of moderate-profound ID, mild ID and General population. Demographics, concomitant AEDs, starting and maximum dosage, exposure length, adverse effects, dropout rates, seizure frequency were collected. Group differences were reported as odds ratios estimated from univariable logistic regression models. RESULTS: Of 232 consented participants, 156 were from the general population and 76 had ID (24 mild, 52 moderate-profound). Twelve month withdrawal rates and reasons, efficacy, side-effects, start and maximum doses were similar between the groups. Dose titration between baseline and three months was significantly slower in the ID group (p = 0.02). CONCLUSION: There were no differences for LCM outcomes between general and ID groups. Slower LCM titration in ID populations in the first 3 months was associated with higher retention and lower behavioural side effects as compared to similar European studies.

Exploring epilepsy attendance at the emergency department and interventions which may reduce unnecessary attendances: A scoping review.

BACKGROUND: Repeat attendances to emergency departments for seizures, impacts on the individual and burdens health care systems. We conducted a review to identify implementable measures which improve the management of people with epilepsy reducing healthcare costs and their supportive evidence. METHODS: A scoping review design using suitable search strategy as outlined by PRISMA-ScR was used to examine seven databases: MEDLINE, EMBASE, CINAHL, AMED, PsychINFO, HMIC and BNI. A manual search of the COCHRANE database and citation searching was also conducted. A thematic analysis was conducted to explore the context and reasons of emergency department attendance for seizures, particularly repeat attendances and the strategies and measures deployed to reduce repeat attendances. RESULTS: Twenty-nine reports were included, comprising of a systematic review, a randomised control study, a multi-method study, quantitative studies (n = 17), qualitative studies (n = 6), an audit, a survey and a quality improvement project. Thematic analysis identified four broad areas for reducing repeat attendances. These were developing care pathways, conducting care and treatment reviews, providing educational interventions and role of ambulance staff. CONCLUSION: The findings indicate varied reasons for attendance at ED following seizure, including mental health and knowledge of seizure management and lack of education. Implementations of care pathways in ED have been found to reduce admission related costs.

Improving epilepsy management with EpSMon: A Templar to highlight the multifaceted challenges of incorporating digital technologies into routine clinical practice.

The digital epilepsy self-monitor (EpSMon) app was developed to address the challenge of improving risk education and management in the UK. The tool, which has emerged out of quality improvement methodology, demonstrates efficacy and has been met with peer-reviewed support and international awards. The focus of this paper is about the development and integration into care of a digital self-assessment epilepsy risk empowerment tool into the UK health system. This paper provides detail into the specific challenges of incorporating a digital epilepsy intervention into routine clinical practice. Despite a strong narrative and evidence, the engagement of commissioners, clinicians, and people with epilepsy is slow. A breakdown of the strategies used, the current governance landscape, and emerging opportunities to develop an informed implementation strategy is provided to support others who seek to create impact with digital solutions for people with epilepsy. This paper is for the Special Issue: Prevent 21: SUDEP Summit - Time to Listen".

Bridging the gap of risk communication and management using the SUDEP and Seizure Safety Checklist.

Sudden unexpected death in epilepsy (SUDEP) is a tragic condition and, despite varied risk levels among the population with epilepsy, is the cause of significant premature mortality. In the last 20 years, though awareness of SUDEP has increased among epilepsy professionals, little has changed with regard to the death rates per se, in rates of informing people with epilepsy (PWE) of their person-centered SUDEP risks, or in the awareness levels of nonepilepsy clinicians, such as, primary care practitioners and hospital doctors. The challenges to make aware and inform PWE have been multifold, in particular, 'when', 'what', and 'how' to tell about SUDEP. Current guidance recognizes that to improve SUDEP rates, it is important to engage proactively with PWE. There is a need to bring shared responsibility between clinicians and PWE to help mitigate the risk of SUDEP. To enable this, a meaningful evidence-based person-centered conversation is essential. The SUDEP and Seizure Safety Checklist ("Checklist") was created to facilitate this. This paper showcases the background, concept, development, implementation, feasibility and validity studies undertaken, challenges, barriers, and limitations of the eight-year Checklist project, which has moved from a single clinic to an international presence. It outlines the need to further reform SUDEP risk communication recognizing the differences between a basic risk message at time of diagnosis as advocated by current good practice guidance and the need for a more person-centered discussion on a regular basis for which the Checklist can be a key catalyst. This article is part of the Special Issue "Prevent 21: SUDEP Summit - Time to Listen".