Janelle L. Wagner

Psychosocial factors associated with stigma in adults with epilepsy.

Living Well with Epilepsy II called for further attention to stigma and its impact on people with epilepsy. In response, the South Carolina Health Outcomes Project on Epilepsy (SC HOPE) is examining the relationship between socioeconomic status, epilepsy severity, health care utilization, and quality of life in persons diagnosed with epilepsy. The current analysis quantifies perceived stigma reported by adults with epilepsy in relation to demographic, seizure-related, health, and psychosocial factors. It was found that reported levels of stigma were associated with interactions of seizure worry and employment status, self-efficacy and social support, and quality care and age at seizure onset. This information may be used to target and develop evidence-based interventions for adults with epilepsy at high risk for perceived stigma, as well as to inform epilepsy research in self-management.

Epilepsy beyond seizure: A population-based study of comorbidities

Comorbid conditions may affect the quality of life in persons with epilepsy (PWE) more than seizures. Using legally mandated healthcare encounter data, somatic, psychiatric, and neurodevelopmental comorbidities in a large population-based cohort of PWE, were compared to persons with migraine (PWM), a similar neurologic condition, and lower extremity fracture (PWLF), otherwise healthy controls. 64,188 PWE, 121,990 PWM, and 89,808 PWLF were identified from inpatient, outpatient, and emergency department from 2000 to 2011. Epilepsy was ascertained with ICD-9-CM code 345; migraine with 346; fracture of the tibia, fibula, and ankle with 823 and 824. Common comorbidities of epilepsy were identified from the literature. Differences in prevalence among PWE, PWM, and PWLF were assessed by comparison of 95% confidence intervals (CI) constructed under the assumption of independence and normal approximation. The association of the comorbid conditions with epilepsy and migraine, compared to lower extremity fracture, were evaluated with polytomous logistic regression controlling for demographic and mortality covariables. PWE had significantly elevated prevalence of comorbidities compared with PWM and PWLF. Compared with PWLF, the adjusted odds ratios (OR) of having both somatic and psychiatric/neurodevelopmental comorbidities were 5.44 (95% CI=5.25-5.63) and 2.49 (95% CI=2.42-2.55) in PWE and PWM, respectively. The association with epilepsy was the strongest for cognitive dysfunction (OR=28.1; 95% CI=23.3-33.8); autism spectrum disorders (OR=22.2; 95% CI=16.8-29.3); intellectual disability (OR=12.9; 95% CI=11.6-14.3); and stroke (OR=4.2; 95% CI=4.1-4.4). The absolute risk increase in PWE compared with PWM for any somatic or psychiatric/neurodevelopmental comorbidity was 58.8% and 94.3%, respectively. Identifying comorbidities that are strongly and consistently associated with seizures, particularly disorders with shared underlying pathophysiology, is critical in identifying specific research and practice goals that may ultimately improve the quality of life for PWE. This study contributes to that effort by providing population-based comorbidity data for PWE compared with PWM and PWLF.

Pilot study of an integrated cognitive-behavioral and self-management intervention for youth with epilepsy and caregivers: Coping Openly and Personally with Epilepsy (COPE)

The aim of this study was to pilot test an intervention based on empirically supported cognitive-behavioral techniques and theory-driven self-management content. The Coping Openly and Personally with Epilepsy (COPE) Program focused on enhancing coping skills, self-efficacy, and self-management to promote resilience in youth with epilepsy and their caregivers. Nine youth aged 10-15 and a parent completed several self-report measures pre- and post-intervention. Results revealed that parents did rate significant improvements in their childrens coping skills following the COPE intervention. Further, compared with pre-assessment, children rated significant improvements in self-efficacy for seizure management. Child knowledge of epilepsy also significantly improved following the intervention. Two children reported mild suicidal ideation prior to the intervention, whereas no children reported ideation following the intervention. Results provide a foundation for further development of the COPE Program and suggest a randomized, controlled trial to examine the effectiveness of COPE for youth with epilepsy and their parents.

Psychosocial issues for children with epilepsy

Epilepsy is a pervasive disorder that consists not only of seizures, but of behavioral, academic, and social difficulties. Epilepsy has an impact on the entire family and may have a significant effect on the interrelationships between child and parent. Epilepsy also has a potentially deleterious effect on academic functioning that may be the result of central nervous system dysfunction, seizures, antiepileptic drugs, or child and family response to illness. Early assessment for psychosocial problems and appropriate interventions can be beneficial for the child and family. Particular attention should be paid to periods of transition such as the move from adolescence to adulthood.

Anxiety and Depression in Older Adolescents With Long-Standing Asthma: The Role of Illness Uncertainty

This study examined the differential contribution of illness uncertainty to self-reported anxiety and depression in a sample of older adolescents with childhood-onset asthma. Fifty-six individuals completed measures of illness uncertainty, anxiety, and depression. In addition, objective assessments of illness severity were obtained via a semistructured interview and pulmonary function test. Results revealed that illness uncertainty contributed significant variance to anxiety after statistically controlling the effects of demographic and disease parameters and depressive symptomatology; illness uncertainty did not contribute significant variance to depression. Findings suggest that interventions should target illness uncertainty and psychosocial education, as well as early identification and treatment of anxiety in this understudied population.

A Hopelessness Model of Depressive Symptoms in Youth with Epilepsy

OBJECTIVE To test the cognitive diathesis-stress and mediational components of the theory of learned hopelessness in youth with epilepsy. METHODS Seventy-seven participants ages 9-17 (35 girls, 42 boys) completed measures of depressive symptoms, hopelessness, self-efficacy for seizure management, and attitude toward epilepsy. Caregivers provided information on seizure activity. Diagnostic and treatment information was obtained via medical record review. RESULTS Regression analyses revealed that hopelessness mediated the attitude towards epilepsy-depressive symptom relationship. While attitude toward epilepsy and self-efficacy were independent predictors of depressive symptoms, the relationship of attitudes toward epilepsy and depressive symptoms was not enhanced with low self-efficacy for seizure management. CONCLUSIONS Findings support the mediation component of the learned hopelessness theory in youth with epilepsy, suggesting the importance of interventions that assist youth in identifying epilepsy-related aspects of functioning over which they can realistically exercise control and challenging negative thoughts about situations they cannot control.

The Relationship of Illness Uncertainty and Attributional Style to Long-Term Psychological Distress in Parents of Children With Type 1 Diabetes Mellitus

This preliminary study longitudinally examined the relationship of illness uncertainty and attributional style to psychological distress among parents of children with type 1 diabetes mellitus. Thirty parents who had participated in a larger study 5 to 6 years earlier completed measures of illness uncertainty, attributional style, and psychological distress. Time 1 illness uncertainty significantly predicted Time 2 distress; Time 1 negative attributional style did not. Post hoc probing revealed that Time 1 illness uncertainty did not mediate Time 1 and Time 2 distress. Results suggest that illness uncertainty continues to be a salient and robust predictor of parental adjustment outcomes over time.

Children's Perceived Illness Uncertainty as a Moderator in the Parent-Child Distress Relation in Juvenile Rheumatic Diseases

Children’s perceived illness uncertaintymoderated the parent-distress/child-depressive-symptom relation. Parent distress was associated with childdepressive symptoms only under conditions of high child-perceived uncertainty; under conditions of lowillness uncertainty, parent distress was unrelated to child depressive symptoms.

Feasibility of a pediatric cognitive-behavioral self-management intervention: Coping Openly and Personally with Epilepsy (COPE)

A pilot study was conducted to examine the feasibility and satisfaction of an integrated cognitive-behavioral and self-management intervention for youth with epilepsy (YWE) and caregivers. The Coping Openly and Personally with Epilepsy (COPE) intervention was based on empirically supported cognitive-behavioral techniques and theory driven self-management content. Content of the intervention consists of epilepsy education, primary and secondary coping skills. Children and adolescents ages 10-15, who had been diagnosed with epilepsy for at least six months (ICD-9345 codes), had at least average intelligence, no history of a serious mental illness, were not currently being treated for major depression, and lived within an 80 mile radius were considered eligible. Nine youth and their caregivers completed the COPE program and provided self-report data on feasibility, accuracy, and satisfaction of the COPE program. Caregivers and youth reported a high level of satisfaction with the COPE program, and findings support the feasibility and accuracy of the intervention content and delivery. Results provide a foundation for future randomized, controlled, clinical trials to examine the effectiveness of the COPE program for youth with epilepsy and their caregivers.

Neurodevelopmental and mental health comorbidities in children and adolescents with epilepsy and migraine: a response to identified research gaps

To determine the distribution and risk characteristics of comorbid neurodevelopmental and mental health comorbidities among children and adolescents (6–18y) with epilepsy or migraine (i.e. a neurological condition with shared features and potential etiology) compared with lower extremity fracture (LEF).