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. Nine behavioral health measures frequently used to screen for anxiety, depression, and disruptive behaviors in the US were selected for evaluation. PubMed, CINAHL, Medline, and APA databases were searched using the following search terms: [target area] + [screening measure] + epilepsy + children [youth], [adolescents]. Inclusion/exclusion criteria for articles were as follows: (1) focused on YWE, (2) written in English, and (3) conducted in the US. Once articles were selected, Hunsley and Mash's criteria were used to evaluate and categorize the screening measures' psychometric properties, which have clear relevance to clinical practice. Measures were also classified into three tiers by the level of validation according to established evidence-based criteria. RESULTS: Forty-one unique papers were identified through the literature search and assessed as eligible. Evaluation of screening measures revealed only two psychometrically sound measures that met criteria for Tier 1, the NDDI-E-Y and the Pediatric NeuroQoL-Depression, both depression screening measures. Several additional depression screening measures met criteria for Tier 2 (CDI-2, BASC-2-Depression Scale, and CBCL Withdrawn/Depressed Scale). Anxiety screening measures have not been validated in pediatric epilepsy and thus only met the criteria for Tier 2 (BASC-2 Anxiety Scale, CBCL DSM-IV Oriented Anxiety Problems Scale, MASC). Similarly for disruptive behaviors, two measures met Tier 2 criteria (BASC-2 Externalizing Problems Index, CBCL Externalizing Problems Index). CONCLUSION: Strides have been made in the validation of behavioral health screening measures for YWE; however, continued research in this area is necessary to validate existing psychometrically sound measures and to develop and evaluate epilepsy-specific measures in the pediatric epilepsy population.

Outcomes and lessons learned from an interprofessional student training program in Screening, Brief Intervention, and Referral to Treatment (SBIRT) at an academic health sciences center.

BACKGROUND AND OBJECTIVES: Screening, Brief Intervention, and Referral to Treatment (SBIRT) is a public health intervention to address overuse and risky use of alcohol and illegal substances. In order to increase SBIRT in clinical practice, training should start with future health care provider students and faculty. The main objective of this program was to improve and enhance the training of health professions students to provide competent screening, brief intervention and referral to treatment for persons who have or are at-risk for substance use disorder. This paper shares the results of an SBIRT training program at an academic health sciences center for undergraduate nursing, graduate nursing, and medical students. DESIGN, SETTING AND PARTICIPANTS: 1229 undergraduate and graduate nursing students, medical students, faculty and preceptors at an academic medical center completed SBIRT coursework integrated into their existing curriculum. Coursework utilized an online learning platform as well as in-person skills training experiences. METHODS: An interprofessional team collaborated to create an online SBIRT curriculum consisting of 5 primary modules (total 3 h) and an SBIRT Booster module (0.5 h). The team also developed pre- and post-module quizzes and satisfaction surveys to measure changes in knowledge, confidence, and satisfaction; as well as simulations, videos, a screening tool, a provider pocket card, and an online resource library to support learning. Faculty and preceptors were trained in the program to model skills and answer student questions. A motivational interviewing specialist provided the in-person skills training sessions. RESULTS: A sustainable interprofessional SBIRT training program demonstrated gains in knowledge, confidence, and skills across all programs. The team used clinical opportunities and simulation with education to promote clinical proficiency. CONCLUSIONS: Interprofessional training mirrors real world clinical situations and encourages all providers to implement SBIRT in practice and decrease poor outcomes associated with substance use disorders.

Learning experience design of an mHealth intervention for parents of children with epilepsy.

PURPOSE: The purpose of this paper is to describe the iterative design, development, and evaluation of a novel mHealth learning environment for parents of children with epilepsy. The mHealth learning environment is a component of a broader behavioral intervention called eACT (Epilepsy Adherence in Children and Technology), which seeks to improve antiepileptic drug adherence in children with epilepsy. The eACT mHealth learning environment integrates theoretical principles from the learning sciences with user-centered design methods and advanced learning technologies to provide an efficient and appealing learning experience that is specifically tailored to adult learners. METHODS: The eACT mHealth learning environment was developed by a multidisciplinary team of experts across three major phases including: 1) preparation, 2) iterative design, and 3) iterative development. The preparation phase included developing user personas and conducting focus groups, which identified user needs and use cases for the product. The iterative learning experience design process made use of rapid prototypes in which the product design was improved between versions, resulting in a final design proof. Usability and user experience methods were deployed to evaluate the system during the iterative development phase. RESULTS: Results from three phases of iterative design and development are presented through user personas, usability data, and qualitative analysis. Findings suggest the eACT mHealth learning environment is highly usable and relevant to the unique needs of adult caregivers of children with epilepsy. Findings also suggest that user experience was largely positive. CONCLUSIONS: This paper reveals key insights about how formative learning experience design processes can lead to highly relevant and usable interventions for adult learners.

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. YWE and their caregivers were asked to complete measures of epilepsy-specific QoL, ADHD symptoms, and EF. Previous ADHD diagnosis was reported by caregivers as well as abstracted from the medical record. RESULTS: Caregiver and YWE reports of current ADHD symptoms significantly predicted all epilepsy-specific QoL domains. Suboptimal QoL was reported for those YWE whose ADHD symptoms were above the clinical threshold compared to YWE whose ADHD symptoms were within the average range. Results were similar for YWE with a documented ADHD vs no ADHD diagnosis. In addition, poorer metacognition and behavioral regulation EF was associated with lower epilepsy-specific QoL for both YWE with ADHD and without ADHD diagnosis. However, in YWE with ADHD, effect sizes were consistently larger for behavioral regulation compared to metacognition across epilepsy-specific QoL domains, with behavioral regulation accounting for 50% of the variance in each of the EF and mood QoL domains. SIGNIFICANCE: Addressing ADHD symptoms, epilepsy-specific, QoL, and EF as part of routine epilepsy care may promote optimal outcomes for YWE with ADHD as well as relieve burden on the healthcare system.

Highlights From AES2020, a Virtual American Epilepsy Society Experience.

Due to COVID-19 a live, in-person meeting was not possible for the American Epilepsy Society in 2020. An alternative, virtual event, the AES2020, was held instead. AES2020 was a great success with 4679 attendees from 70 countries. The educational content was outstanding and spanned the causes, treatments, and outcomes from epileptic encephalopathy to the iatrogenicity of epilepsy interventions to neurocognitive disabilities to the approach to neocortical epilepsies. New gene therapy approaches such as antisense oligonucleotide treatment for Dravet syndrome were introduced and neuromodulation devices were discussed. There were many other topics discussed in special interest groups and investigators' workshops. A highlight was having a Nobel prize winner speak about memory processing. Human intracranial electrophysiology contributes insights into memory processing and complements animal work. In a special COVID symposium, the impact of COVID on patients with epilepsy was reviewed. Telehealth has been expanded rapidly and may be well suited for some parts of epilepsy care. In summary, the epilepsy community was alive and engaged despite being limited to a virtual platform.

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. Group differences in COVID-19 impact on families were also examined based on race and ethnicity, being medically and/or geographically underserved, and insurance status. METHODS: Participants (n = 131) included children with epilepsy and their families from two clinical trials. The Impact of COVID-19 on Pediatric Epilepsy Management (ICPEM) measure was developed and administered to caregivers online from April 2020 to September 2020 across four large pediatric hospitals. Administration of the ICPEM occurred both during routine study assessments and an additional acute time point to obtain information early in the pandemic (e.g., April and May 2020). Descriptive statistics and t-tests were used for analyses. RESULTS: Data indicate minor to moderate impact of COVID-19 on pediatric epilepsy management. Caregivers of children with epilepsy reported the most impact on education and social functioning. Adherence to CDC guidelines was reported to be high. Those having public insurance reported greater difficulties obtaining daily anti-seizure medications compared to those with private insurance. CONCLUSIONS: This study presents important initial data regarding the impact of COVID-19 epilepsy management and daily functioning in children with epilepsy and their families. While the acute impact of COVID-19 restrictions appear to be mild to moderate, it is unclear what the long-term impact of the pandemic will be on families of children with epilepsy.

Integration of Telehealth Education into the Health Care Provider Curriculum: A Review.

Introduction: Telehealth is a rapidly expanding health care delivery modality with increasing utility in the health care community. It is imperative that telehealth education is provided during the training of health care providers to ensure the proper usage and application of this health care delivery system. A comprehensive literature review of telehealth education integrated into the curricula of physician, physician assistant, and advanced practiced registered nurse training programs has not been reported to date. Materials and Methods: An electronic literature search was performed using Scopus®, PubMed, and 17 of the 35 databases on the EBSCOHost platform. We included studies where telehealth concepts and components were integrated in the curriculum for primary care students. We extracted information pertinent to understanding the scope and sustainability of the curriculum and tabulated the results. Results: After a full-text screening of 164 articles and critically analyzing 34, eight articles were included in this review. Comparison of these articles showed no consistency in how telehealth was integrated into the various health care curricula. Content delivered usually included basic telehealth information, however, the depth and breadth of content varied significantly based on the interventions. Discussion: For the articles included in this review, there were no formal study designs regarding basic telehealth educational integration or competencies. While authors recommended conducting evaluation and determining the effectiveness of the interventions, they did not provide a clear picture as to how these efforts should be conducted. Conclusions: In addition to developing a standardized telehealth curriculum, national competencies need to be created, which will guide the development of standardized curriculum across health care training programs.

Leadership Development in Academic Health Science Centers: Towards a Paradigm Shift.

PROBLEM: In an era of increasing complexity, leadership development is an urgent need for academic health science centers (AHSCs). The Association of American Medical Colleges (AAMC) and others have described the need for a focus on organizational leadership development and more rigorous evaluation of outcomes. Although the business literature notes the importance of evaluating institutional leadership culture, there is sparse conversation in the medical literature about this vital aspect of leadership development. Defining the leadership attributes that best align with and move an AHSC forward must serve as the foundational framework for strategic leadership development. APPROACH: In 2015, the Medical University of South Carolina (MUSC) began a systematic process to approach strategic leadership development for the organization. An interprofessional group completed an inventory of our leadership development programs and identified key drivers of a new institutional strategic plan. A strategic leadership advisory committee designed a series of leadership retreats to evaluate both individual and collective leadership development needs. OUTCOMES: Three key drivers were identified as critical attributes for the success of our institutional strategy. Four specific areas of focus for the growth of the institution's ideal leadership culture were identified, with specific action items or behaviors developed for our leaders to model. As a result of this foundational work, we have now launched the MUSC Leadership Institute. NEXT STEPS: Knowledge of our current leadership culture, key drivers of strategy and our desired collective leadership attributes are the basis for building our institutional leadership development strategy. This will be a longitudinal process that will start with senior leadership engagement, organizational restructuring, new programming and involve significant experimentation. Disciplined, thoughtful evaluation will be required to find the right model. In addition to individual transformation with leadership development, MUSC will measure specifically identified strategic outcomes and performance metrics for the institution.

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. Parents also completed the 86-item Behavior Rating Inventory of Executive Function (BRIEF), a widely validated measure of executive functioning. RESULTS: The PedsQL™ Cognitive Functioning Scale evidenced excellent reliability (patient self-report α = 0.88; parent proxy-report α = 0.96), distinguished between youth with epilepsy and an age, gender, and race/ethnicity-matched healthy sample supporting discriminant validity with large effect sizes (~20-30 point score differences, P < 0.001), and demonstrated concurrent and construct validity, respectively, through large effect size intercorrelations with the BRIEF (Behavioral Regulation Index, Metacognition Index, Global Executive Composite Summary Scores rs = 0.43-0.67, P < 0.001) and the PedsQL™ Generic Core Scales (Total Scale Scores rs = 0.67-0.74, P < 0.001). Minimal clinically important difference (MCID) scores ranged from 5.92 to 8.80. CONCLUSIONS: The PedsQL™ Cognitive Functioning Scale demonstrated excellent internal consistency reliability, discriminant, concurrent, and construct validity in youth with epilepsy and may be suitable as a brief generic patient-reported outcome (PRO) measure for clinical research, clinical trials, and routine clinical practice in pediatric epilepsy.

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. SURVEY INFORMATION: Twenty-five AES members representing 25 unique epilepsy programs across the United States participated in the survey. Findings are described in terms of three focus areas: (1) Systems, (2) Assessment, and (3) Intervention. Over 80% of respondents surveyed reported that they do conduct formal screenings, most commonly to determine if further evaluation is indicated (81%), inform treatment decisions (57.1%), and for developmental surveillance (33.3%). Assessment methods were fairly evenly split between nonstandardized informal questions (50%) and evidence-based broadband measures, with the Behavior Assessment System for Children (BASC), 2nd or 3rd Editions (40%) most commonly used. If behavioral health concerns are identified, referrals are often made for psychotherapy (48% in-house; 80% community-based), psychiatry (68% in-house; 48% community-based), and cognitive testing (88% neuropsychological testing; 36% for psychoeducational testing). Thirty-two percent refer for psychotropic medication management. CONCLUSION: According to this survey, a number of epilepsy centers and clinics incorporate behavioral health screening; however, there is significant variability in assessments/measures used, who is administering them, and their purpose in the trajectory of treatment. These findings emphasize the need for standardization across centers in order to most effectively provide comprehensive care for youth with 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. Caregivers and youth (5 years and older) completed the parent- or self-report versions of the PedsQL Epilepsy Module. Caregivers also completed measures of behavior and mood, AED side effects, and executive functioning in children. Clinical cutoffs were calculated in two ways: anchor-based (receiver operating characteristic (ROC) curve) and distribution-based (0.5 standard deviation (SD)). Medical characteristics were abstracted from the medical chart. t-Tests and chi-square tests were used to determine whether children's HRQOL classified as normative or impaired in epilepsy quality of life differed on seizure freedom, AED side effects, and polytherapy. RESULTS: The final clinical cutoffs were as follows for each PedsQL Epilepsy Module subscale (caregiver and child): Impact (Parent = 60.7; Child = 64.39), Cognitive (Parent = 38.11; Child = 50.97), Executive Functioning (Parent = 46.65; Child = 57.15), Sleep (Parent = 42.07; Child = 43.90), and Mood/Behavior (Parent = 54.14; Child = 53.30). Youth with more severe AED side effects, ongoing seizures, and/or on polytherapy were more likely to have impaired quality of life across domains. CONCLUSION: Clinical cutoffs extend this instrument's utility in surveilling common psychosocial comorbidities, tracking changes in functioning over time, and informing clinical decision-making in youth with epilepsy including recommendations for additional assessment and intervention by a range of health providers serving youth with epilepsy (YWE).

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. Youth ages 8 and older and caregivers of all youth completed the Behavior Assessment System for Children-2 (BASC-2). Caregivers also completed the Pediatric Epilepsy Side Effects Questionnaire (PESQ) and a Background Questionnaire. Medical chart review provided information regarding epilepsy diagnosis and treatment. RESULTS: No differences were observed in the mean scores on AED adverse effects between the group with subclinical/clinical BASC-2 Depressive symptoms and those with average/low depressive symptoms. In contrast, the proportion of youth with subclinical/clinical versus average/low depressive symptoms via caregiver report was significantly different for the cognitive, behavioral, general neurological, and total scale of the PESQ. There was also a larger proportion of youth with self-reported subclinical/clinical depressive symptoms who experienced general neurological adverse effects compared with youth with average/low depressive symptoms who experienced general neurological adverse effects. Findings were consistent for anxiety symptoms. SIGNIFICANCE: Identifying potentially modifiable behavioral health symptoms that exacerbate the expression of AED adverse effects could provide alternative solutions for improved AED tolerability to achieve optimum treatment outcomes.

A feasibility study exploring self-care and parenting for adults recovering from addictive substances.

Little information is available on parental self-care while in recovery from addictive substances, and its relationship to parenting and recovery outcomes. We evaluated the feasibility of obtaining self-care and parenting outcomes for adults in long-term recovery from addictive substances, and explored potential contributing factors. Nineteen mothers and fathers who self-reported at least two years of sobriety participated in this study. Feasibility challenges included recruitment and scheduling interviews, given multiple work and personal demands on participants' schedules. Possible associations of self-care to parental efficacy (PE), parenting behaviors, resilience, and total recovery years were examined as indicators to parental functioning. The exploratory analyses showed a significant moderate correlation between PE and parenting behaviors (r = 0.45, p < 0.05) as well as total years in recovery and age (r = 0.43, p < 0.05); total years in recovery differed significantly when compared by race (χ2 (1) = 5.63; p = 0.018) and education (χ2 (1) = 3.94; p = 0.048). There was also a significant inverse relationship between total years in recovery and PE (r = -0.43, p < 0.05) and parental self-care (r = -0.59, p < 0.01). Recruiting parents (especially minorities) in long-term recovery was very challenging indicating that recruitment through community organizations was not feasible without a site champion. Preliminary findings showed statistically significant correlations among self-care, parental efficacy, age, and total years in recovery. As researchers and clinicians, it is necessary to determine the role and impact of self-care for future intervention development, however, recruitment strategies need to be modified to ensure sufficiently large study samples.

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. METHODS: Youth 5-18 years with diagnosed epilepsy and caregivers completed a battery of questionnaires as part of a larger national validation of the Pediatric Quality of Life (PedsQL) Epilepsy Module. The primary measure of interest was the Behavior Rating Inventory of Executive Function-Parent Form. Medical chart reviews and demographic data were also collected. Latent class analysis was used to identify EF phenotypes. Chi-square and analyses of covariance (ANCOVA) were conducted to examine EF phenotype group differences on seizure outcomes, HRQOL, and behavioral and emotional functioning. RESULTS: Two-hundred and thirty-seven children with epilepsy (Mage = 11.2 years; 56% female; 60% White: Non-Hispanic; 55% experienced seizures in the past three months) and their caregivers participated. Four EF phenotypes were identified: Group 1 - No EF deficits (45% of sample), Group 2 - Global EF deficits (29% of sample), Group 3 - Behavioral Regulation + Working Memory deficits (8% of sample), and Group 4 - Metacognitive deficits (17% of sample). No significant EF phenotype group differences were found for seizure characteristics. The ANCOVAs indicated significant EF phenotype group differences on HRQOL (parent-reported Impact, Cognitive, Sleep, EF, and Mood/Behavior and child-reported Cognitive, Sleep, EF, and Mood/Behavior subscales; ps < .001) and emotional and behavioral functioning (Externalizing, Internalizing, and Behavioral Symptom Index; ps < .001), with the Global EF deficits (Group 2) and Behavioral Regulation + Working Memory deficits groups (Group 3) demonstrating the greatest level of impairment. CONCLUSION: Phenotypic variability in EF is significantly related to patient-reported outcomes. Interventions addressing EF deficits need to be individualized to a child's particular EF phenotype to achieve optimal outcomes.

Can state-supported interprofessional coalitions cure preceptor shortages?

The shortage of clinical preceptors compromises the current and future supply of healthcare providers and patient access to primary care. This article describes how an interprofessional coalition in South Carolina formed and sought government support to address the preceptor shortage. Some states have legislated preceptor tax credits and/or deductions to support the clinical education of future primary care healthcare providers. As a result of the coalition's work, a bill to establish similar incentives is pending in the South Carolina legislature.

The 360-degree evaluation model: A method for assessing competency in graduate nursing students. A pilot research study.

BACKGROUND: The 360 Degree Evaluation Model is one means to provide a comprehensive view of clinical competency and readiness for progression in an online nursing program. OBJECTIVES: This pilot project aimed to evaluate the effectiveness of implementing a 360 Degree Evaluation of clinical competency of graduate advanced practice nursing students. DESIGN: The 360 Degree Evaluation, adapted from corporate industry, encompasses assessment of student knowledge, skills, behaviors and attitudes and validates student's progression from novice to competent. SETTINGS: Cohort of advanced practice nursing students in four progressive clinical semesters. PARTICIPANTS: Graduate advanced practice nursing students (N = 54). METHODS: Descriptive statistics and Jonckheere's Trend Test were used to evaluate OSCE's scores from graded rubric, standardized patient survey scores, student reflection and preceptor evaluation. RESULTS: We identified all students passed the four OSCEs during a first attempt or second attempt. Scaffolding OSCE's over time allowed faculty to identify cohort weakness and create subsequent learning opportunities. Standardized patients' evaluation of the students' performance in the domains of knowledge, skills and attitudes, showed high scores of 96% in all OSCEs. Students' self-reflection comments were a mix of strengths and weaknesses in their self-evaluation, demonstrating themes as students progressed. Preceptor evaluation scores revealed the largest increase in knowledge and learning skills (NONPF domain 1), from an aggregate average of 90% in the first clinical course, to an average of 95%. CONCLUSIONS: The 360 Degree Evaluation Model provided a comprehensive evaluation of the student and critical information for the faculty ensuring individual student and cohort data and ability to analyze cohort themes.

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

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. Twenty-five studies that evaluated factors associated with self-management were identified. Individual and family-focused factors were the most commonly studied predictors of self-management, with psychosocial care needs and self-efficacy for seizure management identified as key factors associated with pediatric epilepsy self-management. Few studies have included mediator and moderator analyses. Measures of adherence were the most commonly used outcome. There has been a predominant focus on pediatric epilepsy influences and processes that are modifiable in nature, potentially at the expense of evidence for the role of community and health systems in pediatric epilepsy self-management. The 6 self-management instrument tools reported scientific rationale and good psychometric properties. Results highlight several key modifiable cognitive and behavioral targets for skills development: adherence, self-efficacy for seizure management, attitudes toward epilepsy, and family variables. Moving forward, a comprehensive pediatric epilepsy self-management model, well-validated measures of self-management behaviors, mediator/moderator designs to examine the complex relationships between predictors and pediatric epilepsy self-management outcomes, and studies examining the community and health care domains of self-management are necessary.

Exploring Self-Care and Preferred Supports for Adult Parents in Recovery from Substance Use Disorders: Qualitative Findings from a Feasibility Study.

Very little is known about the self-care behaviors (SCB) that adult parents employ and the preferred supports they utilize to maintain their recovery from substance use disorders (SUD) while also parenting their children. This study used a qualitative descriptive approach to explore perceptions of self-care and parenting to inform future self-care interventions for parents in early recovery. Nineteen mothers and fathers of at least one child between the ages of 6-18 were interviewed by telephone about parental self-care practices while in recovery from SUD, recovery management, and preferred supports in the community. Participants described the experience of parenting as challenging, with variations in the level of support and resources. Self-care included meaningful connection with recovery support and children, taking care of physical health, maintaining spirituality, healthy eating, exercise, journaling, continuing education, staying busy, sponsorship, establishing boundaries, self-monitoring, abstinence, and dealing with destructive emotions. Participants reported SCB as being a critical component of their ongoing recovery and their parenting practices, though differences in SCB by gender and for minorities require further exploration. Parental gains were perceived as benefits of SCB that minimized the negative impact of prior parental drug use on their children.

Validation of the PedsQL Epilepsy Module: A pediatric epilepsy-specific health-related quality of life measure.

OBJECTIVE: To validate a brief and reliable epilepsy-specific, health-related quality of life (HRQOL) measure in children with various seizure types, treatments, and demographic characteristics. METHODS: This national validation study was conducted across five epilepsy centers in the United States. Youth 5-18 years and caregivers of youth 2-18 years diagnosed with epilepsy completed the PedsQL Epilepsy Module and additional questionnaires to establish reliability and validity of the epilepsy-specific HRQOL instrument. Demographic and medical data were collected through chart reviews. Factor analysis was conducted, and internal consistency (Cronbach's alphas), test-retest reliability, and construct validity were assessed. RESULTS: Questionnaires were analyzed from 430 children with epilepsy (Mage = 9.9 years; range 2-18 years; 46% female; 62% white: non-Hispanic; 76% monotherapy, 54% active seizures) and their caregivers. The final PedsQL Epilepsy Module is a 29-item measure with five subscales (i.e., Impact, Cognitive, Sleep, Executive Functioning, and Mood/Behavior) with parallel child and caregiver reports. Internal consistency coefficients ranged from 0.70-0.94. Construct validity and convergence was demonstrated in several ways, including strong relationships with seizure outcomes, antiepileptic drug (AED) side effects, and well-established measures of executive, cognitive, and emotional/behavioral functioning. SIGNIFICANCE: The PedsQL Epilepsy Module is a reliable measure of HRQOL with strong evidence of its validity across the epilepsy spectrum in both clinical and research settings.