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. The final articles were mapped using the Epilepsy SDoH Conceptual Framework to identify gaps. FINDINGS: Our review suggests that there are multidimensional associations of SDoH in ASM adherence. The SDoH were interrelated. Race/ethnicity and socioeconomic status appeared to have major associations with ASM adherence. Several gaps in the literature were identified, including inadequately exploring the effect that each SDoH has on treatment adherence, and the methods used for assessment. CONCLUSIONS: Future longitudinal research to address the identified gaps would foster interventions that promote ASM adherence among vulnerable populations living with epilepsy.

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). Participants included 201 dyads of children with epilepsy and either their mother or father. The results showed that when parents perceived higher difficulties managing their child's epilepsy and/or reported that their child was more affected by this condition, children reported higher perceived stigma and worse HRQoL only when parents had a higher social comparison orientation. Our results are innovative in showing that when parents have a higher social comparison orientation, their children may be at increased risk of poorer outcomes.

Telephone Assessment and Skill-Building Kit for Stroke Caregivers: A Randomized Controlled Clinical Trial.

BACKGROUND AND PURPOSE: There are few evidence-based programs for stroke family caregivers postdischarge. The purpose of this study was to evaluate efficacy of the Telephone Assessment and Skill-Building Kit (TASK II), a nurse-led intervention enabling caregivers to build skills based on assessment of their own needs. METHODS: A total of 254 stroke caregivers (primarily female TASK II/information, support, and referral 78.0%/78.6%; white 70.7%/72.1%; about half spouses 48.4%/46.6%) were randomized to the TASK II intervention (n=123) or to an information, support, and referral group (n=131). Both groups received 8 weekly telephone sessions, with a booster at 12 weeks. General linear models with repeated measures tested efficacy, controlling for patient hospital days and call minutes. Prespecified 8-week primary outcomes were depressive symptoms (with Patient Health Questionnaire Depressive Symptom Scale PHQ-9 ≥5), life changes, and unhealthy days. RESULTS: Among caregivers with baseline PHQ-9 ≥5, those randomized to the TASK II intervention had a greater reduction in depressive symptoms from baseline to 8, 24, and 52 weeks and greater improvement in life changes from baseline to 12 weeks compared with the information, support, and referral group (P<0.05); but not found for the total sample. Although not sustained at 12, 24, or 52 weeks, caregivers randomized to the TASK II intervention had a relatively greater reduction in unhealthy days from baseline to 8 weeks (P<0.05). CONCLUSIONS: The TASK II intervention reduced depressive symptoms and improved life changes for caregivers with mild to severe depressive symptoms. The TASK II intervention reduced unhealthy days for the total sample, although not sustained over the long term. CLINICAL TRIAL REGISTRATION: URL: https://www.clinicaltrials.gov. Unique identifier: NCT01275495.

The National Institute of Nursing Research Graduate Partnerships Program (NINR-GPP): an opportunity for PhD students.

The Institutional Graduate Partnerships Program (GPP) offered by the National Institute of Nursing Research (NINR) provides an exceptional opportunity for students who are enrolled in any PhD program in nursing across the nation to complete dissertation research on the premier research campus of the National Institutes of Health, Bethesda, MD. The goal of this doctoral fellowship program, which is up to 3 years in length, is to train promising doctoral students in basic and clinical research. This knowledge and skill set is necessary for the next generation of nurse scientists to ultimately conduct translational research. In this article, the authors describe the program, eligibility requirements, application procedures, and selection criteria for NINR-supported GPP nursing students. Also provided are tips for interested students and outcomes of current and former NINR-supported GPP students (NINR-GPP).

Problem-solving intervention for caregivers of children with mental health problems.

UNLABELLED: Building Our Solutions and Connections (BOSC) focused on enhancing problem-solving skills (PSS) of primary caregivers of children with mental health problems. Aims were determining feasibility, acceptability, and effect size (ES) estimates for depression, burden, personal control, and PSS. METHODS: Caregivers were randomized to BOSC (n=30) or wait-list control (WLC) groups (n=31). Data were collected at baseline, post-intervention, and 3 and 6 months post-intervention. RESULTS: Three-months post-intervention, ES for burden and personal control were .07 and .08, respectively. ES for depressed caregivers for burden and personal control were 0.14 and 0.19, respectively. CONCLUSIONS: Evidence indicates that the intervention had desired effects.

Testimonies submitted for the Institute of Medicine report: epilepsy across the spectrum: promoting health and understanding.

The 2012 Institute of Medicine (IOM) report, Epilepsy Across the Spectrum: Promoting Health and Understanding, provides a vision for moving the field forward to improve the lives of people with epilepsy. The committee made 13 recommendations and identified a number of research priorities to promote accomplishing this vision. Its work was enriched by the contributions of many individuals who testified before the committee during its two public workshops and who submitted written testimony throughout the study process. Many of these testimonies included in this article were presented in-person at the committee's public workshops in Los Angeles, CA on March 21, 2011 and in Washington, DC on June 28-29, 2011. Among those providing testimony were people with epilepsy, their family members, health care professionals, and researchers specializing in epilepsy. The 36 testimonies that comprise this publication provided the committee with a more complete and current picture of epilepsy-related health care issues and the challenges that epilepsy imposes on the lives of people with epilepsy and their families.

Pediatric psychogenic nonepileptic seizures: a study of assessment tools.

The goal of this study was to identify assessment tools and associated behavioral domains that differentiate children with psychogenic nonepileptic seizures (PNES) from those with epilepsy. A sample of 24 children with PNES (mean age 14.0 years, 14 female), 24 children with epilepsy (mean age 13.6 years, 13 female), and their parents were recruited from five epilepsy centers in the United States. Participants completed a battery of behavioral questionnaires including somatization, anxiety, and functional disability symptoms. Children with PNES had significantly higher scores on the Childhood Somatization and Functional Disability Inventories, and their parents reported more somatic problems on the Child Behavior Checklist (CBCL). Depression, anxiety, and alexithymia instruments did not differentiate the groups. Measures of somatization and functional disability may be promising tools for differentiating the behavioral profile of PNES from that of epilepsy. Increased somatic awareness and perceived disability emphasize the similarity of PNES to other pediatric somatoform disorders.

Stroke caregiver outcomes from the Telephone Assessment and Skill-Building Kit (TASK).

PURPOSE: Stroke caregivers often express the need for information about stroke and assistance with stroke-related care in the early discharge period. The Telephone Assessment and Skill-Building Kit (TASK) is an 8-week program that addresses caregiver needs. This study explored the efficacy of the TASK program in improving stroke caregiver outcomes. METHOD: Guided by a conceptual model, 6 outcomes (optimism, task difficulty, threat appraisal, depressive symptoms, life changes, general health perceptions) were measured in 40 caregivers randomized to the TASK (n=21) or an attention control group (n=19). Data were analyzed using analysis of covariance (ANCOVA), controlling for baseline scores and minutes spent with the nurse. RESULTS: Significant increases in optimism at 4 weeks, 8 weeks, and 12 weeks were found, with medium effect sizes for the TASK group relative to the control group (p<.05). Significant improvements in task difficulty at 4 weeks, and threat appraisal at both 8 weeks and 12 weeks were also found (p<.05). CONCLUSION: Caregivers receiving the TASK intervention improved in optimism, task difficulty, and threat appraisal. Further testing of an enhanced version of the TASK program is warranted, with attention directed toward more distal stroke caregiver outcomes.

Economic impact of epilepsy in the United States.

PURPOSE: To assess differences in medical care expenditures and informal care received for adults and children by individuals' self-reported epilepsy status and to estimate the total economic impact of epilepsy in the United States. METHODS: Pooled medical expenditure panel survey data from 1996-2004 were used. Children's regression analyses were adjusted for race, sex, general self-reported health status, family size, and age. Adults' analyses were also adjusted for income and education. The national annual economic impact was estimated by multiplying the average individual differences by previously published national prevalence data. RESULTS: The results of regressions appropriately weighted to account for study design indicate excess medical expenditures for those with epilepsy of $4,523 [95% confidence interval: $3,184-$5,862]. Excess expenditures were similar for adults and children. Adults with epilepsy received 1.2 extra days of informal care [95% confidence interval: 0.2-2.3]. The national impact included $9.6 billion of medical expenditures and informal care. DISCUSSION: Epilepsy has significant impact on individual medical expenditure and generates a national impact in the billions of dollar.

Social stigma for adults and children with epilepsy.

For many people with epilepsy, the continuing social reality of their condition is as a stigma. Epilepsy stigma has three different levels; internalized, interpersonal, and institutional. While there have been documented improvements in public attitudes towards epilepsy, the remnants of "old" ideas about epilepsy continue to inform popular concepts resulting in a difficult social environment for those affected. The social and quality of life problems arising from a diagnosis of epilepsy can represent greater challenges than are warranted by its clinical severity. The relationship between stigma and impaired quality of life is well documented. Tackling the problem of stigma effectively requires that all three of different levels at which it operates are systematically addressed.

Psychosocial care needs of children with recent-onset asthma.

PURPOSE: To examine psychosocial care needs of children with recent-onset asthma. DESIGN/METHODS: Data were collected over 2 years from 63 children ages 8-14 years. RESULTS: Children's need for attention to specific aspects of their asthma care remained high over the 2 years, as did their perceived needs for information and support and their concerns and fears. PRACTICE IMPLICATIONS: Children have many needs, and healthcare professionals may not be providing care that addresses these needs. The Child Report of Psychosocial Care can be used as a quick tool to assess and guide interventions related to specific areas of need.

Living Well II: a review of progress since 2003.

Epilepsy as an issue for the public health community has a relatively short history in the United States. Not since the 1970s, when Congress established the Commission for the Control of Epilepsy and Its Consequences and the publication of its formal report, "Plan for Nationwide Action on Epilepsy," has significant attention been paid to the public health implications of epilepsy. In fact, until the U.S. Congress established a small epilepsy program at the Centers for Disease Control and Prevention (CDC) 12 years ago, the condition was practically invisible at all levels of organized public health. Since then, two major conferences, and the recommendations arising from them, have generated a substantially increased level of activity in research, surveillance, and the production and distribution of public education materials, as well as a national initiative to improve access to care and to prevent epilepsy's negative social impact. Even at the state level, long devoid of any attention to epilepsy in public health planning or provision of services, things are beginning to change, and new demonstration programs designed to identify and serve vulnerable populations with epilepsy are underway. This review highlights these activities, reflects a new and heightened level of attention to epilepsy, and speculates on what may lie ahead in the ongoing effort to give epilepsy greater visibility and higher priority in the public health arena.

Behavioral and mental health problems in low-income children with special health care needs.

This study examined caregiver perceptions of mental health problems and counseling needs in low-income children with special health care needs (CSHCN). Interviewers collected data from 257 caregivers of CSHCN (61% males; 60% African American; Mean age = 8.4 years) attending six Midwestern inner-city health clinics. Measures included the Child Behavior Checklist (CBCL) and an investigator-designed questionnaire. CBCL T-scores indicated that 38% of CSHCN had a behavioral or mental health problem, but only 26% of caregivers perceived the need for treatment or counseling. CSHCN should be assessed and referred appropriately for behavioral and mental health problems during routine health care visits.

Time and difficulty of tasks provided by family caregivers of stroke survivors.

Family caregivers of stroke survivors are at risk for negative health outcomes such as depression, psychosocial impairments, and even mortality as a result of providing care. Shortened hospital stays have contributed to the urgent need for caregivers to manage difficult and time-consuming tasks required for the care of stroke survivors in the home setting. The purposes of this study were to (a) identify which tasks were perceived as most time-consuming and difficult, (b) determine which of these tasks were most predictive of mood and other negative caregiver outcomes, and (c) evaluate the psychometric properties of the Oberst Caregiving Burden Scale (OCBS) as a measure of tasks in stroke caregivers. A cross-sectional design was employed using mailed questionnaires from 116 family caregivers of stroke survivors featuring the OCBS, the Profile of Mood States Short Form, and the Bakas Caregiving Outcomes Scale. The tasks perceived as most time-consuming and difficult, which also were predictive of mood and other negative caregiver outcomes, were managing finances, managing behaviors, and providing emotional support. Strong psychometric properties of the OCBS were found at both item and subscale levels. Developing an individual profile using the OCBS items may help to target individual support interventions for caregivers. Suggested interventions include referring caregivers to resources for tasks that fall outside the scope of nursing practice, supporting caregivers with tasks such as providing emotional support or managing behavioral problems, and encouraging caregivers to seek care for their own physical, emotional, or social needs.

Teacher assessment of behaviour in children with new-onset seizures.

RATIONALE: Recent data suggest that children with new-onset seizures may be at increased risk for behaviour problems. Teachers are an excellent source of data about such problems. They do not have the potential bias that a parent worried about a new onset of seizures might have and, furthermore, they are accustomed to comparing performance of children and work in an environment in which the behavioural problems associated with epilepsy may be quite evident. We obtained teachers' reports of behaviour problems in children in the 2 months prior to their first recognized seizure. We also obtained similar data on children with new-onset, moderate severity asthma. In addition to comparing behavioural scores between children with seizures and children with asthma, we compared teachers' assessments of behaviour in children with no prior seizures to those of children with previously unrecognized seizures. METHODS: We evaluated 192 children with new-onset seizures, including 129 children with no prior episodes and 63 children with recognized prior seizure-like episodes. The comparison group consisted of 78 children with new-onset, moderate severity asthma. Behaviour was assessed by the teacher's report form (TRF) of the child behaviour checklist (CBCL) or the caregiver-teacher report form for ages 2-5 (C-TRF). Mean scores were compared by two-sample t -tests and analysis of variance (ANOVA). RESULTS: The children with new-onset seizures had more thought problems than children with asthma. In comparison to children with no prior seizures, the children with prior unrecognized seizures had higher scores in total behaviour problems, internalizing problems, somatic complaints, anxious/depressed, thought problems, and attention problems. CONCLUSIONS: In this sample, children with prior unrecognized seizures were already at increased risk of teacher-rated behaviour problems before starting medication and before any possible stigma effects related to seizures. This sequence suggests underlying neurological problems causing both behavioural problems and seizures.