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.

Racial disparities in the utilization of invasive neuromodulation devices for the treatment of drug-resistant focal epilepsy.

Racial disparities affect multiple dimensions of epilepsy care including epilepsy surgery. This study aims to further explore these disparities by determining the utilization of invasive neuromodulation devices according to race and ethnicity in a multicenter study of patients living with focal drug-resistant epilepsy (DRE). We performed a post hoc analysis of the Human Epilepsy Project 2 (HEP2) data.

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.

Toward an ontology of collaborative learning healthcare systems.

Objective: To establish a basis for a domain ontology - a formal, explicit specification of a shared conceptualization - of collaborative learning healthcare systems (CLHSs) in order to facilitate measurement, explanation, and improvement.

Methods: We adapted the "Methontology" approach to begin building an ontology of CLHSs. We specified the purpose of an ontology, acquired domain knowledge via literature review, conceptualized a common framework of CLHSs using a grounded approach, refined these concepts based on expert panel input, and illustrated concept application via four cases.

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.

Identification of clinically relevant biomarkers of epileptogenesis - a strategic roadmap.

Onset of many forms of epilepsy occurs after an initial epileptogenic insult or as a result of an identified genetic defect. Given that the precipitating insult is known, these epilepsies are, in principle, amenable to secondary prevention. However, development of preventive treatments is difficult because only a subset of individuals will develop epilepsy and we cannot currently predict which individuals are at the highest risk.

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).

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.

Implementing standardized provider documentation in a tertiary epilepsy clinic.

Objective: To incorporate standardized documentation into an epilepsy clinic and to use these standardized data to compare patients' perception of epilepsy diagnosis to provider documentation.

Methods: Using quality improvement methodology, we implemented interventions to increase documentation of epilepsy diagnosis, seizure frequency, and type from 49.8% to 70% of adult nonemployee patients seen by 6 providers over 5 months of routine clinical care.

Factors Associated with Caregiver Sleep Quality Related to Children with Rare Epilepsy Syndromes.

Objective: To evaluate the impact of pediatric sleep disturbances and night-time seizure monitoring of children with rare epilepsy syndromes on the sleep quality and mental health of caregivers.

Study Design: A cross-sectional study was conducted using caregiver entered data from the Rare Epilepsy Network on pediatric sleep disturbances and Patient Reported Outcomes Measurement Information System measures for caregiver fatigue, sleep disturbance, sleep-related impairment, depression, anxiety, companionship, and cognition. Logistic regression was used to examine associations between risk factors and caregiver sleep quality.

A feasibility assessment of functioning and quality-of-life patient-reported outcome measures in adult epilepsy clinics: A systematic review.

Objective: The objective of the study was to identify functioning and quality-of-life (QOL) patient-reported outcome measurements (PROMs) feasible for use in the waiting room of adult epilepsy clinics.

Material And Methods: We searched PubMed and Web of Science for articles on in English, Spanish, Portuguese, Italian, and French published by the end of February 15th, 2019. We screened retrieved titles and abstracts looking for publications that reported the use of PROMs to measure functioning and QOL in epilepsy.

Patient and caregiver preferences for the potential benefits and risks of a seizure forecasting device: A best-worst scaling.

Background: Epilepsy is the 4th most common neurological disorder and is characterized by recurrent, unpredictable seizures. The ability to forecast seizures is a significant unmet need and would have a transformative effect on the lives of people living with epilepsy. In an effort to address this need, the Epilepsy Foundation has committed effort and resources to promote the development of seizure forecasting devices (SFD).

Comorbidities of Rare Epilepsies: Results from the Rare Epilepsy Network.

Objective: To describe the prevalence and characteristics of comorbidities in persons with rare epilepsies.

Study Design: Persons with rare epilepsies and caregivers of those affected were recruited through the Epilepsy Foundation and more than 30 rare epilepsy advocacy organizations affiliated with the Rare Epilepsy Network (REN). A web-based survey was conducted using a questionnaire consisting of core sections to collect data from affected persons on various aspects, including comorbidities.

Applying participatory action research in traumatic brain injury studies to prevent post-traumatic epilepsy.

The increased focus on stakeholder engagement in determining the aims, design, conduct of research and dissemination of results is substantially changing the biomedical research paradigm. In this era of patient-centered care, incorporating participatory action research methodology into large-scale multi-center studies is essential. The adoption of community engagement facilitates meaningful contribution to the design and implementation of clinical studies.

Seizure Forecasting from Idea to Reality. Outcomes of the My Seizure Gauge Epilepsy Innovation Institute Workshop.

The Epilepsy Innovation Institute (Ei) is a new research program of the Epilepsy Foundation designed to be an innovation incubator for epilepsy. Ei research areas are selected based on community surveys that ask people impacted by epilepsy what they would like researchers to focus on. In their 2016 survey, unpredictability was selected as a top issue regardless of seizure frequency or severity.

Reducing placebo exposure in trials: Considerations from the Research Roundtable in Epilepsy.

The randomized controlled trial is the unequivocal gold standard for demonstrating clinical efficacy and safety of investigational therapies. Recently there have been concerns raised about prolonged exposure to placebo and ineffective therapy during the course of an add-on regulatory trial for new antiepileptic drug approval (typically ∼6 months in duration), due to the potential risks of continued uncontrolled epilepsy for that period. The first meeting of the Research Roundtable in Epilepsy on May 19-20, 2016, focused on "Reducing placebo exposure in epilepsy clinical trials," with a goal of considering new designs for epilepsy regulatory trials that may be added to the overall development plan to make it, as a whole, safer for participants while still providing rigorous evidence of effect.