Premature discontinuation among individuals with epilepsy participating in epilepsy self-management research interventions.

Objective: The Managing Epilepsy Well (MEW) Network conducts epilepsy self-management (ESM) intervention development, testing, and archival clinical trials data analyses in the MEW Network Integrated Database (MEW-DB). However, not all trial participants fully benefit from ESM due to prematurely discontinuing program participation. This analysis sought to identify demographic and clinical predictors of premature discontinuation (PD) of ESM interventions available in the MEW-DB.

Supervised machine learning to predict reduced depression severity in people with epilepsy through epilepsy self-management intervention.

Objective: To develop a classifier that predicts reductions in depression severity in people with epilepsy after participation in an epilepsy self-management intervention.

Methods: Ninety-three people with epilepsy from three epilepsy self-management randomized controlled trials from the Managing Epilepsy Well (MWE) Network integrated research database met the inclusion criteria. Supervised machine learning algorithms were utilized to develop prediction models for changes in self-reported depression symptom severity.

Long-Term Safety and Efficacy of Deutetrabenazine in Younger and Older Patients With Tardive Dyskinesia.

Objectives: To assess long-term safety and efficacy of deutetrabenazine in younger (<55 years) and older (≥55 years) adult participants with tardive dyskinesia (TD).

Design: Three-year, single-arm, open-label extension (OLE) study enrolling participants who completed the 12-week, pivotal ARM-TD or AIM-TD studies.

Setting: Seventy-six centers in the United States and Europe.

The Managing Epilepsy Well (MEW) network database: Lessons learned in refining and implementing an integrated data tool in service of a national U.S. Research Collaborative.

Epilepsy self-management (ESM) is the summative set of behaviors that people with epilepsy use to cope with seizures and optimize health. This report describes the implementation and evolution of the Managing Epilepsy Well Network Database (MEW DB), an integrated data resource intended to advance knowledge on ESM. The MEW DB utilizes a three-tiered (Tier 1-3) system of data organization, with tiers of data generally increasing in ascending complexity or collection burden.

Effects of a remotely delivered group-format epilepsy self-management program on adverse health outcomes in vulnerable people with epilepsy: A causal mediation analysis.

Background: People with epilepsy frequently experience negative health events (NHEs), such as emergency room visits or hospitalizations for epilepsy-related complications despite significant advances in care. We developed a novel remotely delivered group-format epilepsy self-management program ("Self-management for people with epilepsy and a history of negative health events"; SMART). In a 6-month randomized controlled trial (RCT), SMART participants had significant decreases in NHEs, as well changes in attitudes and behaviors compared to a wait-list (Sajatovic et al.

Ethnicity and health outcomes among people with epilepsy participating in an epilepsy self-management RCT.

People with epilepsy (PWE) may experience negative health events (NHEs) such as seizures, emergency room visits, and hospitalizations, with ethnic and racial minorities disproportionately affected. Epilepsy self-management may reduce NHEs; however, few reports examine self-management outcomes in racial minorities. Using data from a longitudinal 6-month randomized controlled trial (RCT) of 120 PWE, this analysis compared African-American and Whites at baseline, 10 weeks and 24 weeks after receiving the "Self-management for people with epilepsy (SMART) and a history of NHEs" self-management program.

Concordance of angiography and cerebral biopsy results for suspected primary central nervous system vasculitis: A multi-center retrospective review.

Objective: Primary CNS Vasculitis (PCNSV) is a rare disease that is often challenging to diagnose. Cerebral angiography and biopsy have been utilized in the diagnostic workup for several decades but limited literature reports on the concordance of findings of angiography and biopsy. The primary objective of this work was to examine how cerebral angiography corresponded with biopsy findings in patients with suspected PCNSV.

One-year follow-up of a remotely delivered epilepsy self-management program in high-risk people with epilepsy.

Objective: "Self-management for people with epilepsy and a history of negative health events" (SMART) is a novel group-format epilepsy self-management intervention demonstrated to reduce negative health events (NHEs) such as accidents, emergency department visits, and seizures in adults with epilepsy in a 6-month prospective randomized controlled trial (RCT); SMART also reduced depressive symptoms and improved health functioning and quality of life. This report describes the longer-term (12-month) post-efficacy RCT outcomes in adults with epilepsy who received SMART.

Methods: After completing a 6-month, prospective RCT that demonstrated efficacy of SMART vs 6-month waitlist control (WL), adults ≥18 years of age with epilepsy were followed for an additional 12 months.

Seizure severity is associated with poor quality of life in people living with epilepsy (PLWE) in Uganda: A cross-sectional study.

Rationale: There is a paucity of information about the association of seizure severity and quality of life (QoL) in people living with epilepsy (PLWE) in sub-Saharan Africa. We evaluated the relationship between seizure severity and health-related quality of life (HRQoL) of patients with epilepsy being followed up in an outpatient neurology clinic in urban central Uganda.

Methods: Forty-eight PLWE who met the study inclusion criteria were enrolled.

Understanding Aging in Bipolar Disorder by Integrating Archival Clinical Research Datasets.

Objective: Although 25% of people with bipolar disorder (BD) are over age 60, there is a dearth of research on older age bipolar disorder (OABD). This report describes an initial effort to create an integrated OABD database using the U.S.

Depression and quality of life among African Americans with epilepsy: Findings from the Managing Epilepsy Well (MEW) Network integrated database.

Depression and worse quality of life (QOL) are significantly associated with epilepsy. However, limited descriptive data on depression and quality of life among African Americans with epilepsy are available. This study sought to describe the prevalence of depression among African Americans with epilepsy participating in self-management studies and to examine the relationship between depression and QOL.

The Community-targeted Self-management of Epilepsy and Mental Illness (C-TIME) initiative: A research, community, and healthcare administration partnership to reduce epilepsy burden.

Aims: Comorbid mental health conditions (MHCs) such as depression and anxiety are common in people with epilepsy. Targeted Self-Management for Epilepsy and Mental Illness (TIME) is a behavioral program that targets mood symptoms in adults with epilepsy and comorbid MHCs. Building upon positive findings of a randomized controlled study to establish the efficacy of TIME, the Community-TIME (C-TIME) initiative assessed the implementation feasibility and pre-/post-outcomes of this new evidence-based epilepsy self-management intervention in a community setting and in collaboration with key stakeholders.

Assessing depression severity with a self-rated vs. rater-administered instrument in patients with epilepsy.

Rationale: Up to 30-50% of individuals with epilepsy have depressive symptoms, which often complicate seizure management and reduce overall quality of life. To identify and manage depressive symptoms appropriately, clinicians need standardized instruments that can accurately identify and monitor those with clinically significant depression. The self-reported 9-item Patient Health Questionnaire (PHQ-9) has been used relatively widely to screen and monitor depression in epilepsy.

Epilepsy misconceptions and stigma reduction interventions in sub-Saharan Africa, a systematic review.

Objective: This systematic review identified papers that described epilepsy misconceptions or stigma in sub-Saharan Africa (SSA) and research interventions focused on reducing these misconceptions.

Materials And Methods: Publications in the English language from January 2000 to October 2017 that described original research conducted in SSA on misconceptions about epilepsy were utilized.

Results: Twenty-three publications were identified.

A Systematic Review of Dementia-related Stigma Research: Can We Move the Stigma Dial?

Stigma negatively affects individuals with cognitive impairment and dementia. This literature review examined the past decade (January 2004 to December 2015) of world-wide research on dementia-related stigma. Using standard systematic review methodology, original research reports were identified and assessed for inclusion based on defined criteria.

Feasibility study of a targeted self-management intervention for reducing stroke risk factors in a high-risk population in Uganda.

Introduction: Stroke remains a global concern due to increasing lifespan, patterns of industrialization, adoption of harmful western diets, and an increasing prevalence of risk factors such as hypertension, obesity, and diabetes. We investigated an adopted novel self-management intervention, TargetEd mAnageMent Intervention (TEAM) to reduce modifiable stroke risk factors in Uganda.

Methods: A six-month, uncontrolled, prospective pilot study to establish feasibility, acceptability and preliminary efficacy of TEAM in Ugandans at high risk for stroke was conducted.

Clinical correlates of negative health events in a research sample with epilepsy.

Aims: In spite of advances in care, people with epilepsy experience negative health events (NHEs), such as seizures, emergency department (ED) visits, and hospitalizations. Being able to identify characteristics that are associated with NHE risk can help inform care approaches that reduce complications and burden. This analysis using baseline data from a larger randomized epilepsy self-management clinical trial assessed the relationship between demographic and clinical variables vs.

The Managing Epilepsy Well Network:: Advancing Epilepsy Self-Management.

Epilepsy, a complex spectrum of disorders, affects about 2.9 million people in the U.S.

Correlates of quality of life among individuals with epilepsy enrolled in self-management research: From the US Centers for Disease Control and Prevention Managing Epilepsy Well Network.

Rationale: Epilepsy is a chronic neurological condition that causes substantial burden on patients and families. Quality of life may be reduced due to the stress of coping with epilepsy. For nearly a decade, the Centers for Disease Control (CDC) Prevention Research Center's Managing Epilepsy Well (MEW) Network has been conducting research on epilepsy self-management to address research and practice gaps.

Evaluating PROMIS(®) applied cognition items in a sample of older adults at risk for cognitive decline.

PROMIS(®) Applied Cognition is a short self-assessment of cognitive abilities and concerns that eliminates the need for a trained rater and provides online question banks that can be uniformly used across health care providers. This 12-month prospective study of 281 elderly individuals evaluates self-perceptions of cognitive functioning in relation to objective cognition, or assessment by an external rater, and compares PROMIS® Applied Cognition Abilities and Concerns subsets with commonly used "legacy" instruments. PROMIS® correlated with objective legacy measures (the Mini-Mental State Examination [MMSE] and Saint Louis University Mental Status [SLUMS] examination), depression (measured with the Geriatric Depression Scale [GDS]), anxiety, and activities of daily living.

Targeted Self-Management of Epilepsy and Mental Illness for individuals with epilepsy and psychiatric comorbidity.

Objectives: Serious mental illness is disproportionately common in people with epilepsy and contributes to complications and mortality. Few care approaches specifically target individuals who have epilepsy and severe mental illness. We used an iterative process to refine an existing intervention and tested the novel intervention, Targeted Self-Management for Epilepsy and Mental Illness (TIME) in individuals with epilepsy and comorbid mental illness (E-MI).

Mixed-methods analysis of internalized stigma correlates in poorly adherent individuals with bipolar disorder.

Background: Internalized stigma, which occurs when stigmatized individuals accept society's assessment and incorporate this assessment into their sense of self, is prevalent in individuals with bipolar disorder (BD). This study explored the correlates of internalized stigma in a research sample of patients with BD who were poorly adherent to their medications.

Methods: Both quantitative and qualitative analyses were performed.

Epilepsy misconceptions and stigma reduction: Current status in Western countries.

Objective: This systematized literature review identified reports describing epilepsy misconceptions in the developed Western countries and research interventions focused on reducing these misconceptions.

Materials And Methods: English language publications from January 2004 to January 2015 that described original research conducted in Europe, North/Central/South America, or Australia on misconceptions about epilepsy among the general public were used for this review.

Results: Eighty-one publications were selected.