The eACT study design and methods: A sequential, multiple assignment, randomized trial of A novel adherence intervention for youth with epilepsy.

Background: Epilepsy is a common, chronic pediatric neurological condition predominately treated with anti-seizure medications (ASMs) to control or reduce seizures. Approximately 60 % of youth with epilepsy demonstrate suboptimal adherence to their ASM. This paper describes the methodology, recruitment, design, and baseline participant characteristics of a sequential, multiple assignment, randomized trial (SMART) designed to test the effectiveness of a behavioral health intervention to improve adherence in families of young children with epilepsy.

Health and Healthcare Disparities in Pediatric Epilepsy in the United States: A Scoping Review.

Objectives: Health disparities impact epilepsy care in children. Previous efforts to summarize data in this population have been limited. This study sought to understand how this information exists in the literature and identify gaps in knowledge.

Key predictors of epilepsy-specific health-related quality of life (HRQOL) in youth with epilepsy.

Purpose: Epilepsy-specific health-related quality of life (HRQOL) is an important outcome in youth with epilepsy (YWE). The PedsQL™ Epilepsy Module is the only caregiver-proxy and youth self-report epilepsy-specific HRQOL measure that can be used with youth 2-25 years. Multiple factors affect HRQOL, including epilepsy-specific characteristics, comorbid mental and behavioral health concerns, as well as sociodemographic factors.

Integrated psychological care services within seizure settings: Key components and implementation factors among example services in four ILAE regions: A report by the ILAE Psychiatry Commission.

Mental health comorbidities are prevalent and problematic in patients with seizures but often suboptimally managed. To address common gaps in care, the Integrated Mental Health Care Pathways Task Force of the International League Against Epilepsy (ILAE) Psychiatry Commission was tasked with providing education and guidance on the integration of mental health management (e.g.

Health Disparities in Pediatric Epilepsy: Methods and Lessons Learned.

Epilepsy affects 1% of youth and is associated with neurocognitive and psychosocial comorbidities, increased risk of mortality, and poor health-related outcomes. Health disparities in children and youth with epilepsy (CYE) have been understudied. A Special Interest Group (SIG) within the Pediatric Epilepsy Research Consortium is conducting a scoping review to systematically assess the literature and highlight the gaps in access to clinical care and management of pediatric epilepsy.

Behavioral health screening in pediatric epilepsy: Which measures commonly used in the United States are 'good enough'?

Purpose: To improve evidence-based implementation of behavioral health screening measures in pediatric epilepsy care, guidance is needed in the selection and interpretation of evidence-based screening measures. Therefore, the goals of this project were to (1) evaluate the clinical utility and psychometric properties of screening instruments frequently used in the United States (US) for anxiety, depression, and behavior problems in youth with epilepsy (YWE), and (2) provide guidance around selection and interpretation of these behavioral health screening measures.

Method: The critique was conducted in three phases: (1) identification of articles based on search criteria; (2) full review of articles for eligibility assessment; (3) evaluation of screening measures and organization into Tiers.

Cochrane systematic review and meta-analysis of the impact of psychological treatment on health-related quality of life in people with epilepsy: an update by the ILAE Psychology Task Force, highlighting methodological changes.

Clinical interest in using psychological interventions for people with epilepsy (PWE) aiming at decreasing mental health difficulties, improving health-related quality of life (HRQOL) and seizure-related outcomes, continues to grow. This article summarizes the 2020 update of the 2017 Cochrane Review and meta-analysis of psychological interventions for PWE, highlighting the reasons for major methodological modifications such as the recategorization of interventions and expanded risk of bias assessment. A 2020 literature search yielded 36 RCTs (n=3526) investigating psychological treatments for PWE with a validated HRQOL measure as an outcome.

ADHD and epilepsy-related QoL in youth with epilepsy.

Objective: Pediatric epilepsy and attention-deficit/hyperactivity disorder (ADHD) present a cumulative vulnerability to youth, particularly in the domains of executive function (EF) and quality of life (QoL). The aim of this study was to explore the relationships between EF and epilepsy-specific QoL in youth with epilepsy (YWE) who also have ADHD.

Methods: Youth with epilepsy aged 5-18 years and caregivers participated in a large multi-site national validation of the PedsQL™ Epilepsy Modules.

Managing depression and anxiety in people with epilepsy: A survey of epilepsy health professionals by the ILAE Psychology Task Force.

Objectives: The Psychology Task Force of the Medical Therapies Commission of the International League Against Epilepsy (ILAE) has been charged with taking steps to improve global mental health care for people with epilepsy. This study aimed to inform the direction and priorities of the Task Force by examining epilepsy healthcare providers' current practical experiences, barriers, and unmet needs around addressing depression and anxiety in their patients.

Methods: A voluntary 27-item online survey was distributed via ILAE chapters and networks.

The psychosocial impact of COVID-19 within the first six months of the pandemic on youth with epilepsy and their caregivers.

Objectives: We assessed the impact of COVID-19 on children with epilepsy and their families, focusing on epilepsy management, family routines, learning, and adherence to Centers for Disease Control and Prevention (CDC) pandemic guidelines (e.g., social distancing, mask wearing) within the first six months of the pandemic.

Psychological treatments for people with epilepsy.

Background: Given the significant impact epilepsy may have on the health-related quality of life (HRQOL) of individuals with epilepsy and their families, there is increasing clinical interest in evidence-based psychological treatments, aimed at enhancing psychological and seizure-related outcomes for this group. This is an updated version of the original Cochrane Review published in Issue 10, 2017.

Objectives: To assess the impact of psychological treatments for people with epilepsy on HRQOL outcomes.

PedsQL™ Cognitive Functioning Scale in youth with epilepsy: Reliability and validity.

Objective: The objective of the study was to report on the internal consistency reliability and discriminant, concurrent and construct validity of the Pediatric Quality of Life Inventory™ (PedsQL™) Cognitive Functioning Scale as a brief generic cognitive functioning measure in youth with epilepsy.

Methods: The 6-item PedsQL™ Cognitive Functioning Scale and 23-item PedsQL™ 4.0 Generic Core Scales were completed by 221 pediatric patients ages 5-18 years with epilepsy and 336 parents of patients ages 2-18 years in a national field test study for the PedsQL™ Epilepsy Module.

Current behavioral health and cognitive screening practices in pediatric epilepsy.

Purpose: Initiatives such as the Epilepsy Learning Healthcare System continue to advocate for standardized care and shared outcome data. Therefore, the current project aim was to gather information from epilepsy healthcare professionals, behavioral health professionals in particular, regarding their behavioral health and cognitive screening practices in pediatric patients with epilepsy. Information obtained will be used to assist in the development of new educational programs and platforms in the American Epilepsy Society (AES) and to inform the development of guidelines for behavioral healthcare of patients with pediatric epilepsy.

Establishing clinical cutoffs for the PedsQL™ Epilepsy Module.

Objective: The purpose of the present study was to establish clinical cutoffs for the PedsQL Epilepsy Module scales by dichotomizing scores into normative or impaired. We predicted that these cutoffs would be useful in identifying children at greater risk for impairments in health-related quality of life (HRQOL) including those who exhibit effects of ongoing seizures, antiepileptic drugs (AEDs), and polytherapy.

Methods: Two hundred and thirty-seven youth (2-18 years old) and their caregivers were recruited from five tertiary care hospitals across the United States.

Vulnerabilities to antiepileptic drug (AED) side effects in youth with epilepsy.

Objective: The objective of the study was to investigate the relationship between sociodemographic, seizure-related, behavioral health, and antiepileptic drug (AED) adverse effect variables. The aim of this study was to examine whether there were significant differences on AED adverse effects between youth with normative and subclinical/clinical depressive and/or anxiety symptoms.

Methods: As part of a larger multisite validation study, 231 youth age 5 to 18 years diagnosed with epilepsy and their caregivers were recruited to participate for the current study.

Highlights From the Annual Meeting of the American Epilepsy Society 2018.

The American Epilepsy Society Meeting in New Orleans attracted more than 5900 attendees. There was a lively exchange of new science, innovation, education, clinical practice, and many other items related to epilepsy. Educational symposia were a major part of the meeting and explored varying topics of interest for all types of epilepsy professionals.

Executive functioning phenotypes in youth with epilepsy.

Objective: The objectives of this study were to identify executive functioning (EF) phenotypes in youth with epilepsy and to examine whether phenotypes differ on psychosocial and medical outcomes (i.e., absence/presence of seizures in the past three months), health-related quality of life (HRQOL), and emotional and behavioral functioning.

Psychological treatments for adults and children with epilepsy: Evidence-based recommendations by the International League Against Epilepsy Psychology Task Force.

Given the significant impact that psychosocial factors and epilepsy treatments can have on the health-related quality of life (HRQOL) of individuals with epilepsy and their families, there is great clinical interest in the role of psychological evaluation and treatments to improve HRQOL and comorbidities. Therefore, the International League Against Epilepsy (ILAE) charged the Psychology Task Force with the development of recommendations for clinical care based on evaluation of the evidence from their recent Cochrane review of psychological treatments in individuals with epilepsy. The literature search for a recent Cochrane review of randomized controlled trials investigating psychological treatments for individuals with epilepsy constitutes the key source of evidence for this article.

Measurement in pediatric epilepsy self-management: A critical review.

Unlabelled: Given the paucity of information available regarding self-management, the aims of this paper are to synthesize the literature on factors associated with and measures to assess self-management in pediatric epilepsy.

Inclusion Criteria: youth birth to 18 years with a seizure disorder or an epilepsy diagnosis and/or their caregivers, published 1985-2014 in English, and conducted in countries with a very high human development index. The review was conducted in 6 phases: (1) identification of bibliographical search criteria and databases; (2) abstract assessment; (3) full article review; (4) organization of final citations into categories; (5) identification of predictors, potential mediators/moderators, and outcomes associated with self-management factors and categorization of factors as influences, processes, or behaviors across individual, family, community, and health care domains; and (6) critique of self-management instrument studies.