Long-term characterization of behavior phenotypes in children with seizures: Analytic approach matters.

Objective: Behavioral problems in children with new onset epilepsies have been well established in the literature. More recently, the literature indicates the presence of unique behavioral patterns or phenotypes in youth with epilepsy that vary significantly in vulnerability and resilience to behavioral problems. This study contrasts the interpretation of behavioral risk as inferred from cross-sectional versus latent group analytic perspectives, as well as the presence, consistency, stability, and progression of behavioral phenotypes in youth with new onset epilepsy and sibling controls over 3 years.

Development of an International Standard Set of Outcomes and Measurement Methods for Routine Practice for Infants, Children, and Adolescents with Epilepsy: The International Consortium for Health Outcomes Measurement Consensus Recommendations.

At present, there is no internationally accepted set of core outcomes or measurement methods for epilepsy clinical practice. The International Consortium for Health Outcomes Measurement (ICHOM) convened an international working group of experts in epilepsy, people with epilepsy, and their representatives to develop minimum sets of standardized outcomes and outcome measurement methods for clinical practice. Using modified Delphi consensus methods with consecutive rounds of online voting over 12 months, a core set of outcomes and corresponding measurement tool packages to capture the outcomes were identified for infants, children, and adolescents with epilepsy.

Development of an International Standard Set of Outcomes and Measurement Methods for Routine Practice for Adults with Epilepsy: The International Consortium for Health Outcomes Measurement Consensus Recommendations.

At present, there is no internationally accepted set of core outcomes or measurement methods for epilepsy clinical practice. Therefore, the International Consortium for Health Outcomes Measurement (ICHOM) convened an international working group of experts in epilepsy, people with epilepsy and their representatives to develop minimum sets of standardized outcomes and outcomes measurement methods for clinical practice that support patient-clinician decision-making and quality improvement. Consensus methods identified 20 core outcomes.

Long-term characterization of cognitive phenotypes in children with seizures over 36 months.

Rationale: Children with new-onset epilepsies often exhibit co-morbidities including cognitive dysfunction, which adversely affects academic performance. Application of unsupervised machine learning techniques has demonstrated the presence of discrete cognitive phenotypes at or near the time of diagnosis, but there is limited knowledge of their longitudinal trajectories. Here we investigate longitudinally the presence and progression of cognitive phenotypes and academic status in youth with new-onset seizures as sibling controls.

The Impact of Sociodemographic Disadvantage on Cognitive Outcomes in Children With Newly Diagnosed Seizures and Their Unaffected Siblings Over 36 Months.

Background: Accumulating evidence indicates that children with newly diagnosed epilepsy have comorbidities including cognitive challenges. Research investigating comorbidities has focused on clinical epilepsy characteristics and neurobiological/genetic correlates. The role that sociodemographic disadvantage (SD) may play has received less attention.

Impact of sociodemographic disadvantage on neurobehavioral outcomes in children with newly diagnosed seizures and their unaffected siblings over 36 months.

Objective: This study was undertaken to determine the short-term and longer term impact of sociodemographic disadvantage on the emotional-behavioral status of youths with new onset epilepsy and their unaffected siblings at the time of diagnosis and the subsequent 3 years.

Methods: Three hundred twelve youths with newly diagnosed epilepsies and 223 unaffected siblings, aged 6-16 years, were independently assessed regarding their emotional and behavioral status by their parents and teachers at baseline, and at 18 at 36 months later; youths with seizures also completed self-report measures of depression, anxiety, and hostility at those three time points. A sociodemographic disadvantage score was computed for each family (children with newly diagnosed seizures and their siblings), and families were separated into four categories from most disadvantaged to least disadvantaged.

Characterizing Sleep Phenotypes in Children With Newly Diagnosed Epilepsy.

Background: Children with epilepsy frequently have sleep, behavior, and cognitive problems at the time of or before the epilepsy diagnosis. The primary goal of this study was to determine if specific sleep disturbance phenotypes exist in a large cohort of children with new-onset epilepsy and if these phenotypes are associated with specific cognitive and behavioral signatures.

Methods: A total of354 children with new-onset epilepsy, aged six to 16 years, were recruited within six weeks of initial seizure onset.

The Relationship Between Sleep, Cognition and Behavior in Children With Newly-Diagnosed Epilepsy Over 36 Months.

Introduction: There is substantial evidence that children with epilepsy experience more sleep, behavior and cognitive challenges than children without epilepsy. However, the literature is limited in describing the relationship between sleep, epilepsy, cognition and behavioral challenges and the interactions amongst these factors over time. This study aims to understand the nature and strength of the relationship between sleep, cognition, mood and behavior in children with new-onset epilepsy as assessed by multiple informants at multiple time periods using multiple different dependent measures.

Systematic review of frequency of felt and enacted stigma in epilepsy and determining factors and attitudes toward persons living with epilepsy-Report from the International League Against Epilepsy Task Force on Stigma in Epilepsy.

Objective: To review the evidence of felt and enacted stigma and attitudes toward persons living with epilepsy, and their determining factors.

Methods: Thirteen databases were searched (1985-2019). Abstracts were reviewed in duplicate and data were independently extracted using a standardized form.

Epilepsy-related stigma and attitudes: Systematic review of screening instruments and interventions - Report by the International League Against Epilepsy Task Force on Stigma in Epilepsy.

Objective: This is a systematic review aimed at summarizing the evidence related to instruments that have been developed to measure stigma or attitudes toward epilepsy and on stigma-reducing interventions.

Methods: This review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) standards. A broad literature search (1985-2019) was performed in 13 databases.

Social determinants of health associated with epilepsy treatment adherence in the United States: A scoping review.

Purpose: The aim of this paper is to share the results of a scoping review in which we examined the social determinants of health (SDoH) that are associated with anti-seizure medication (ASM) treatment adherence among people living with epilepsy in the United States.

Methods: Our review was informed by the methods of Arksey and O'Malley for a scoping review. A total of 3,826 articles were identified for reference through a literature search, of which 17 publications were deemed relevant to our scoping review.

Exploring the relationship between parent-child communication about epilepsy and psychosocial well-being.

This study examined the relationship between parent-child communication and psychosocial well-being of 47 children living with epilepsy and 72 parents of children living with epilepsy. Open communication was associated with positive illness attitude, positive self-perception and greater health-related quality of life for children living with epilepsy; positive response to illness for parents; and more perceived social support and less need for epilepsy-related support for children living with epilepsy and parents. By contrast, closed communication was associated with poorer psychosocial well-being in children living with epilepsy and parents.

Family rituals in pediatric epilepsy: Links to parental competence and adaptation.

This cross-sectional study examined the associations between family ritual meaning and 3 indicators of parental adaptation (anxious and depressive symptoms and quality of life) via 2 dimensions of parental competence-satisfaction and efficacy-in parents of children with epilepsy. Two hundred Portuguese parents of children diagnosed with epilepsy for at least 6 months completed self-report measures assessing the main study variables. Our results showed that when parents reported stronger family ritual meaning, they also reported higher levels of parental satisfaction and efficacy, which were in turn were associated with lower psychological distress (anxious and depressive symptoms) and better quality of life of parents.

Development and psychometric evaluation of the youth and parent versions of the Epilepsy Disclosure Scale (EDS).

Objectives: The aim of this paper was to describe the development and psychometric evaluation of new Epilepsy Disclosure Scales (EDSs) for youths with epilepsy (YWE) and their parents.

Methods: Developing the EDSs for youths and parents comprised a number of stages, including questionnaire construction and item development for the new EDSs (consisting of a pilot and review of the newly developed EDSs) and psychometric evaluation of the measures to assess their appropriateness, factor structure, reliability, and validity. Psychometric properties were determined using a cross-sectional survey of 47 YWE and 72 parents.

Biomarkers as Common Data Elements for Symptom and Self-Management Science.

Purpose: Biomarkers as common data elements (CDEs) are important for the characterization of biobehavioral symptoms given that once a biologic moderator or mediator is identified, biologically based strategies can be investigated for treatment efforts. Just as a symptom inventory reflects a symptom experience, a biomarker is an indicator of the symptom, though not the symptom per se. The purposes of this position paper are to (a) identify a "minimum set" of biomarkers for consideration as CDEs in symptom and self-management science, specifically biochemical biomarkers; (b) evaluate the benefits and limitations of such a limited array of biomarkers with implications for symptom science; (c) propose a strategy for the collection of the endorsed minimum set of biologic samples to be employed as CDEs for symptom science; and (d) conceptualize this minimum set of biomarkers consistent with National Institute of Nursing Research (NINR) symptoms of fatigue, depression, cognition, pain, and sleep disturbance.

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.

The psychological costs of comparisons: Parents' social comparison moderates the links between family management of epilepsy and children's outcomes.

Parents play a key role in how children deal with epilepsy. When diagnosed with health conditions, people seek comparison information from fellow patients and families, and this information has consequences for how they evaluate their situation. This study examined the moderating role of parents' social comparison orientation in the associations between family management (parental perceptions of family life difficulties and child's daily life) and adaptation outcomes of children with epilepsy (HRQoL and perceived stigma).

Self-management interventions in pediatric epilepsy: What is the level of evidence?

Objective: To respond to recommendations put forth by the Institute of Medicine to improve self-management resources for youth with epilepsy by conducting a systematic review of the self-management literature in pediatric epilepsy.

Methods: 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. Abstract and keywords had to explicitly refer to "self-care" (pre-1996) and/or self-management (post-1996).

Feasibility of Combining Common Data Elements Across Studies to Test a Hypothesis.

Purpose: The purpose of this article is to describe the outcomes of a collaborative initiative to share data across five schools of nursing in order to evaluate the feasibility of collecting common data elements (CDEs) and developing a common data repository to test hypotheses of interest to nursing scientists. This initiative extended work already completed by the National Institute of Nursing Research CDE Working Group that successfully identified CDEs related to symptoms and self-management, with the goal of supporting more complex, reproducible, and patient-focused research.

Design: Two exemplars describing the group's efforts are presented.

Family Cohesion, Stigma, and Quality of Life in Dyads of Children With Epilepsy and Their Parents.

To examine the mediating role of stigma on the links between family cohesion and quality of life (QoL) in children with epilepsy and their parents. Participants were 192 families attending three Portuguese public hospitals. Children and parents completed self-report measures of family cohesion, stigma, QoL, and health-related QoL (HRQoL).

Recommendations of Common Data Elements to Advance the Science of Self-Management of Chronic Conditions.

Purpose: Common data elements (CDEs) are increasingly being used by researchers to promote data sharing across studies. The purposes of this article are to (a) describe the theoretical, conceptual, and definition issues in the development of a set of CDEs for research addressing self-management of chronic conditions; (b) propose an initial set of CDEs and their measures to advance the science of self-management; and (c) recommend implications for future research and dissemination.

Design And Methods: Between July 2014 and December 2015 the directors of the National Institute of Nursing Research (NINR)-funded P20 and P30 centers of excellence and NINR staff met in a series of telephone calls and a face-to-face NINR-sponsored meeting to select a set of recommended CDEs to be used in self-management research.

The stigma experiences and perceptions of families living with epilepsy: Implications for epilepsy-related communication within and external to the family unit.

Objective: This paper presents the stigma experiences of children with epilepsy (CWE) and their parents and outlines the relationship between CWE's and parents' stigma perceptions, demographic and seizure variables, and epilepsy-related communication within and external to the family.

Methods: A mixed-method design was employed. In phase one, 33 CWE and 40 parents participated in qualitative interviews.

Parent perspectives of the challenging aspects of disclosing a child's epilepsy diagnosis to others: Why don't they tell?

Objectives This study aimed to explore the challenges parents of children with epilepsy (CWE) experienced when deciding to disclose their child's epilepsy diagnosis to others. Methods Using a qualitative exploratory design, interviews were conducted with 34 parents (27 mothers and 7 fathers) of 29 CWE (aged 6-16 years). Parents were recruited from a neurology clinic of a specialist children's hospital and from a national epilepsy association.