Subcutaneous electroencephalography monitoring for people with epilepsy and intellectual disability: co-production workshops.

Background: Nearly 25% of people with intellectual disability (PwID) have epilepsy compared to 1% of the UK general population. PwID are commonly excluded from research, eventually affecting their care. Understanding seizures in PwID is particularly challenging because of reliance on subjective external observation and poor objective validation.

Brain reserve and physical disability in secondary progressive multiple sclerosis.

Background: The brain reserve hypothesis posits that larger maximal lifetime brain growth (MLBG) may confer protection against physical disability in multiple sclerosis (MS). Larger MLBG as a proxy for brain reserve, has been associated with reduced progression of physical disability in patients with early MS; however, it is unknown whether this association remains once in the secondary progressive phase of MS (SPMS). Our aim was to assess whether larger MLBG is associated with decreased physical disability progression in SPMS.

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.

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.

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.

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.

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.

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.

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.

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).

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.

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

. 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.

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.

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.

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).

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.

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.

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.

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.

Head first - Review of epilepsy head injury risk and protection.

Introduction: The causes of falls and resultant head injuries in people with epilepsy are complex and represent important clinical issues significantly impacting on safety, quality of life and long-term prognosis. A general solution for many years has been to provide helmets for head protection. There is poor understanding of the influencing risk factors and solutions to give person-centred clinical advice.

Has the Time Come to Stratify and Score SUDEP Risk to Inform People With Epilepsy of Their Changes in Safety?

Recent publication of the American Academy of Neurology SUDEP guidance highlighted the importance to American clinicians of making people with epilepsy aware of SUDEP risk. It is the first guideline to do this in the United States. It follows precedent set out in the UK by National Institute of Clinical Excellence in 2004.

Sudden unexpected death in epilepsy in children: a focused review of incidence and risk factors.

Sudden unexpected death in epilepsy (SUDEP) in children, although rare, needs critical attention given the tragic nature and devastating consequences for families and caregivers. True incidence is unknown and risk factors are not completely understood, more so in children compared with adults. A focused narrative review of available studies on paediatric SUDEP was undertaken to comprehend its risk factors and to develop strategies to recognise and where possible modify SUDEP risk and ultimately reduce incidence.