Barriers to Medication Adherence in People Living With Epilepsy.

Background And Objectives: Epilepsy affects approximately 1.2% of the US population, resulting in 3.4 million Americans with active epilepsy.

Health Disparities Among Sexual and Gender Minority People Living With Epilepsy: A Cross-Sectional Analysis.

Background And Objectives: Visibility of sexual and gender minority (SGM) people has been steadily increasing over the recent years; however, little is known about the distinct seizure and mental health characteristics among SGM people with epilepsy. In this study, we describe these characteristics among SGM subgroups.

Methods: Data on demographics, seizure metrics, mental health, and quality of life were collected using patient-reported questionnaires gathered at first epilepsy clinic visits as part of routine clinical care from January 2019 to September 2023 at Massachusetts General Hospital.

Patient and provider attitudes regarding sudden unexpected death in epilepsy disclosure at a low-resource, minority community health center.

Background: Sudden Unexpected Death in Epilepsy (SUDEP) is a complication of epilepsy responsible for approximately 1 death per 1000 patients. The literature has demonstrated minimal SUDEP disclosure between providers and patients, although patients have consistently reported desire to know about their risk. However, the majority of these studies has been conducted in Caucasian populations which did not seek to include lower socio-economic class individuals.

Familial aggregation of seizure outcomes in four familial epilepsy cohorts.

Objective: To assess the possible effects of genetics on seizure outcome by estimating the familial aggregation of three outcome measures: seizure remission, history of ≥4 tonic-clonic seizures, and seizure control for individuals taking antiseizure medication.

Methods: We analyzed families containing multiple persons with epilepsy in four previously collected retrospective cohorts. Seizure remission was defined as being 5 and 10 years seizure-free at last observation.

Improving Seizure Frequency Documentation and Classification.

Background And Objectives: Accurate and reliable seizure data are essential for evaluating treatment strategies and tracking the quality of care in epilepsy clinics. This quality improvement project aimed to increase seizure documentation (i.e.

Ontology-based feature engineering in machine learning workflows for heterogeneous epilepsy patient records.

Biomedical ontologies are widely used to harmonize heterogeneous data and integrate large volumes of clinical data from multiple sources. This study analyzed the utility of ontologies beyond their traditional roles, that is, in addressing a challenging and currently underserved field of feature engineering in machine learning workflows. Machine learning workflows are being increasingly used to analyze medical records with heterogeneous phenotypic, genotypic, and related medical terms to improve patient care.

EEG parameters as endpoints in epilepsy clinical trials - An expert panel opinion paper.

Introduction: The lack of ideal measurement of treatment efficacy is a well acknowledged problem in the epilepsy community, both in clinical care and clinical trials. Whilst still the current gold-standard, self-reported seizure frequency significantly underestimates the true number of seizures and does not account for any other at least equally important outcome parameters, such as neurodevelopment and cognition. With the rise of disease modifying treatments, the need for more reliable endpoints in practice and clinical trials becomes more pressing.

Improving Care for Families and Children with Neurodevelopmental Disorders and Co-occurring Chronic Health Conditions Using a Care Coordination Intervention.

Objective: This clinical intervention study aimed to improve care integration and health service delivery for children with concurrent neurodevelopmental disorders and chronic health conditions. This population has significant unmet needs and disproportionate deficits in service delivery. A lack of coordination across child service sectors is a common barrier to successful treatment and support of children with neurodevelopmental disorders with complex medical needs.

Standardization of seizure response times and data collection in an epilepsy monitoring unit.

Objective: We sought to improve seizure response times in the epilepsy monitoring unit, improve the accuracy and reliability of seizure response time data collection, and develop a standardized and automated approach for seizure response data collection in the EMU.

Methods: We used Quality Improvement (QI) methodology to understand the EMU workflow involved in responding to seizures (a process map); to create a theory of change that stated the desired aim, potential drivers/barriers and interventions (i.e.

How to do things with words: Two seminars on the naming of functional (psychogenic, non-epileptic, dissociative, conversion, …) seizures.

Amongst the most important conditions in the differential diagnosis of epilepsy is the one that manifests as paroxysms of altered behaviour, awareness, sensation or sense of bodily control in ways that often resemble epileptic seizures, but without the abnormal excessive or synchronous electrical activity in the brain that defines these. Despite this importance, there remains little agreement - and frequent debate - on what to call this condition, known inter alia as psychogenic non-epileptic seizures (PNES), dissociative seizures (DS), functional seizures (FS), non-epileptic attack disorder (NEAD), pseudoseizures, conversion disorder with seizures, and by many other labels besides. This choice of terminology is not merely academic - it affects patients' response to and understanding of their diagnosis, and their ability to navigate health care systems.

Seizure documentation in people living with epilepsy.

Seizure documentation is an essential component of epilepsy management. Not all persons with epilepsy choose to document their seizures, but many view the practice as essential to managing their disease. While seizure documentation is a valuable aspect of patient care, clinicians and patients must remain aware that seizure underreport and overreport commonly occur due to lack of seizure awareness.

Creation and implementation of an electronic health record note for quality improvement in pediatric epilepsy: Practical considerations and lessons learned.

Objective: To describe the development of the Pediatric Epilepsy Outcome-Informatics Project (PEOIP) at Alberta Children's Hospital (ACH), which was created to provide standardized, point-of-care data entry; near-time data analysis; and availability of outcome dashboards as a baseline on which to pursue quality improvement.

Methods: Stakeholders involved in the PEOIP met weekly to determine the most important outcomes for patients diagnosed with epilepsy, create a standardized electronic note with defined fields (patient demographics, seizure and syndrome type and frequency and specific outcomes- seizure type and frequency, adverse effects, emergency department visits, hospitalization, and care pathways for clinical decision support. These were embedded in the electronic health record from which the fields were extracted into a data display platform that provided patient- and population-level dashboards updated every 36 hours.

Preferred practices for rescue treatment of seizure clusters: A consensus-driven, multi-stakeholder approach.

Background: Some of the most difficult issues in the care of people living with epilepsy (PWE) regard the definition, treatment, and communication of unexpected increase(s) in seizure frequency over a relatively short duration of time. In order to address this issue, the Epilepsy Foundation established the Rescue Therapy Project in Epilepsy to understand the gaps, needs, and barriers facing people with epilepsy who use or may benefit from rescue therapies (RTs) for "seizure clusters". The intent was to provide consensus-derived recommendations from a broad stakeholder group including PWE, their caregivers, epilepsy specialist physicians, nurses, pharmacists, and representatives of epilepsy & neurology advocacy and professional organizations.

Improving Patient-Centered Communication about Sudden Unexpected Death in Epilepsy through Computerized Clinical Decision Support.

Background: Sudden unexpected death in epilepsy (SUDEP) is a rare but fatal risk that patients, parents, and professional societies clearly recommend discussing with patients and families. However, this conversation does not routinely happen.

Objectives: This pilot study aimed to demonstrate whether computerized decision support could increase patient communication about SUDEP.

Establishing a learning healthcare system to improve health outcomes for people with epilepsy.

Objective: To describe the organization of the Epilepsy Learning Healthcare System (ELHS), a network that aims to improve care outcomes for people with epilepsy (PWE).

Materials And Methods: Patients and family partners, providers, researchers, epidemiologists, and other leaders collaborated to recruit epilepsy centers and community services organizations into a novel learning network. A multidisciplinary Coordinating Committee developed ELHS governance and organizational structure, including four key planning Cores (Community, Clinical, Quality Improvement, and Data).

Design and implementation of electronic health record common data elements for pediatric epilepsy: Foundations for a learning health care system.

Objective: Common data elements (CDEs) are standardized questions and answer choices that allow aggregation, analysis, and comparison of observations from multiple sources. Clinical CDEs are foundational for learning health care systems, a data-driven approach to health care focused on continuous improvement of outcomes. We aimed to create clinical CDEs for pediatric epilepsy.

Psychogenic non-epileptic seizures in children - psychophysiology & dissociative characteristics.

The purpose of this study was to determine psychophysiology and dissociative characteristics of psychogenic non-epileptic seizures (PNES) in a clinical pediatric setting. A retrospective chart review was conducted over a 5-year period that included children meeting criteria for probable, clinically established or documented PNES. Of these, 33 patients (81%) underwent psychophysiology assessment as part of standardized care and were selected for study inclusion.

Big data in epilepsy: Clinical and research considerations. Report from the Epilepsy Big Data Task Force of the International League Against Epilepsy.

Epilepsy is a heterogeneous condition with disparate etiologies and phenotypic and genotypic characteristics. Clinical and research aspects are accordingly varied, ranging from epidemiological to molecular, spanning clinical trials and outcomes, gene and drug discovery, imaging, electroencephalography, pathology, epilepsy surgery, digital technologies, and numerous others. Epilepsy data are collected in the terabytes and petabytes, pushing the limits of current capabilities.

Accuracy of ICD-10-CM claims-based definitions for epilepsy and seizure type.

Objective: To evaluate the accuracy of ICD-10-CM claims-based definitions for epilepsy and classifying seizure types in the outpatient setting.

Methods: We reviewed electronic health records (EHR) for a cohort of adults aged 18+ years seen by six neurologists who had an outpatient visit at a level 4 epilepsy center between 01/2019-09/2019. The neurologists used a standardized documentation template to capture the diagnosis of epilepsy (yes/no/unsure), seizure type (focal/generalized/unknown), and seizure frequency in the EHR.