Joan K. Austin

Neuropsychological status at seizure onset in children Risk factors for early cognitive deficits

Objective: This large, prospective, community-based study characterized neuropsychological functioning and academic achievement at the time of the first recognized seizure and identified risk factors for cognitive deficits. Methods: We compared 282 children (ages 6–14 years, IQ ≥70) with a first recognized seizure to 147 healthy siblings on a battery of well-standardized and widely used neuropsychological and academic achievement tests and examined relationships with demographic and clinical variables. Results: In this intellectually normal cohort, 27% with just one seizure and up to 40% of those with risk factors exhibited neuropsychological deficits at or near onset. Risk factors associated with neuropsychological deficits included multiple seizures (i.e., second unprovoked seizure; odds ratio [OR] = 1.96), use of antiepileptic drugs (OR = 2.27), symptomatic/cryptogenic etiology (OR = 2.15), and epileptiform activity on the initial EEG (OR = 1.90); a child with all 4 risks is 3.00 times more likely than healthy siblings to experience neuropsychological deficits by the first clinic visit. Absence epilepsy carried increased odds for neuropsychological impairment (OR = 2.00). Conclusions: A subgroup of intellectually normal children with seizures showed neuropsychological deficits at onset. Academic achievement was unaffected, suggesting that there is a window early in the disorder for intervention to ameliorate the impact on school performance. Therefore, the risk factors identified here (especially if multiple risks are present) warrant swift referral for neuropsychological evaluation early in the course of the condition.

DEVELOPMENT OF SCALES TO MEASURE PSYCHOSOCIAL CARE NEEDS OF CHILDREN WITH SEIZURES AND THEIR PARENTS

&NA; There is little research and no selfreport assessment instruments available to guide nurses in the provision of psychosocial care to children with seizures and their families. Information on the development of two instruments, Report of Psychosocial Care Scale and Child Report of Psycyhosocial Care Scale, and their use in a research study to measure psychosocial care of children with new‐onset seizures and their parents are presented in three parts. This first article describes development and initial testing of their psychometric properties. The second article, Part 2, “Psychosocial Care Needs of Parents of Children with New‐Onset Seizures,” describes results from the use of the parent scale with mothers and fathers of children with new‐onset seizures. The third article, Part 3, “Psychosocial Care Needs of Children with New‐Onset Seizures,” reports findings from the use of the child scale with children ages 8–14 years with new‐onset seizures.

Psychiatric disorders in children and adolescents who have epilepsy

1. Jana E. Jones, PhD* 2. Joan K. Austin, DNS, RN† 3. Rochelle Caplan, MD‡ 4. David Dunn, MD§ 5. Sigita Plioplys, MD** 6. Jay A. Salpekar, MD¶ 1. *Assistant Professor, Department of Neurology, University of Wisconsin School of Medicine and Public Health, Madison, Wisc 2. †Distinguished Professor of Nursing, Indiana University School of Nursing, Indianapolis, Ind 3. ‡Professor, Department of Psychiatry and Biobehavioral Sciences, University of California at Los Angeles, Calif 4. §Arthur B. Richter Professor of Child Psychiatry, Indiana University, Indianapolis, Ind 5. **Assistant Professor, Psychiatry and Behavioral Sciences, Feinberg School of Medicine, Northwestern University, Chicago, Ill 6. ¶Assistant Professor of Psychiatry and Pediatrics, George Washington University School of Medicine, Washington, DC Epilepsy occurs in approximately 1% of the population. It is the third most common neurologic disorder in the United States after Alzheimer disease and stroke. The prevalence of epilepsy is equal to the combined prevalence of cerebral palsy, multiple sclerosis, and Parkinson disease. Epilepsy is the most common childhood neurologic disorder, affecting 0.5% to 1.0% of children younger than age 16 years. (1) More than 326,000 children younger than age 15 years have epilepsy, and approximately 90,000 have seizures that are not controlled completely by treatment. Epilepsy often occurs in conjunction with other conditions, including autism spectrum disorder, cerebral palsy, Down syndrome, and intellectual disability. Although seizures are the most readily identifiable feature of epilepsy, behavior and cognitive functioning also are affected negatively in a substantial number of children. The prevalence of psychiatric comorbidity in epilepsy is significantly higher than in healthy controls or in children who have other chronic health conditions. This article reviews the current knowledge of coexisting psychiatric disorders in children who have epilepsy and discusses diagnostic and treatment issues. Two epidemiologic investigations, conducted in the United Kingdom 3 decades apart, demonstrate that psychiatric comorbidity is overrepresented in pediatric epilepsy. In the classic Isle of Wight study, Rutter and associates (2) reported that 7% of children in the general population exhibited a mental health problem compared with 12% of children who had non-neurologic physical disorders. Significantly higher rates were reported in those having epilepsy, including 29% in children who had uncomplicated (idiopathic and cryptogenic) epilepsy and 58% in those who had complicated epilepsy (seizures in the context of structural central nervous system abnormalities). Strikingly similar findings were reported in a recent United Kingdom epidemiologic investigation by Davies and colleagues. (3) Among children ages 5 to 15 years of age, psychiatric disorders were found in 9.3% of the …

Youth With Epilepsy: Development of a Model of Children's Attitudes Toward Their Condition.

A model of childrens attitudes toward their epilepsy was tested in 173 children (9-14 years) with epilepsy and their parents. Predictor variables tested were child characteristics, family mastery, child worry, child self-efficacy for seizure management, child psychosocial care needs, and seizure variables. Data were analyzed using structural equation modeling, leading to a revised model in which less child worry, greater family mastery, and greater child seizure self-efficacy were directly related to more child positive attitudes. Discussion focuses on potential targets for psychosocial interventions aimed at improving attitudes toward epilepsy.

Development of a Self-Efficacy Scale for Children and Adolescents With Epilepsy

The purpose of this study was to develop and test the psychometric properties of a Seizure Self-Efficacy Scale for Children (SSES-C). An initial pool of test items was generated using a variety of resources, including literature reviews, child self-efficacy measures from other chronic diseases, and self-efficacy measures for adult patients with epilepsy. Experts in the field of self-efficacy, chronic illness self-management, and behavioral management of seizure disorders were asked to evaluate item content and readability. The scale was administered via computer-assisted telephone interviews to 175 children ages 9 through 14 years who had had epilepsy for 6 months or more. Content validity of the SSES-C was ensured by 80% agreement on test items by experts. The final version of the scale has 15 items. Construct validity was supported by factor analysis and correlation of the SSES-C to other constructs of influence on the health behavior of children with epilepsy. Specifically, the SSES-C was significantly correlated with attitude toward illness, worry, unmet needs for psychosocial care, child depression, and child self-concept. Internal consistency reliability for the measure was also adequate (a = .93). The primary result of this study was the development of an easily administered and useful 15-item scale to measure the degree of self-efficacy experienced by children and adolescents related to the management of their seizure disorder. The SSES-C is a promising questionnaire that has potential for use as a clinical and research tool to measure self-efficacy in children with seizures.

Research implications of the Institute of Medicine Report, Epilepsy Across the Spectrum: Promoting Health and Understanding

In March 2012 the Institute of Medicine (IOM) released the report, Epilepsy Across The Spectrum: Promoting Health and Understanding. This report examined the public health dimensions of the epilepsies with a focus on the following four areas: public health surveillance and data collection and integration; population and public health research; health policy, health care, and human services; and education for providers, people with epilepsy and their families, and the public. The report provided recommendations and research priorities for future work in the field of epilepsy that relate to increasing the power of data on epilepsy; prevention of epilepsy; improving health care for people with epilepsy; improving health professional education about epilepsy; improving quality of life for people with epilepsy; improving education about epilepsy for people with epilepsy and families; and raising public awareness about epilepsy. For this article, the authors selected one research priority from each of the major chapter themes in the IOM report: expanding and improving the quality of epidemiologic surveillance in epilepsy; developing improved interventions for people with epilepsy and depression; expanding early identification/screening for learning impairments in children with epilepsy; evaluating and promoting effective innovative teaching strategies; accelerating research on the identification of risk factors and interventions that increase employment and improve quality of life for people with epilepsy and their families; assessing the information needs of people with epilepsy and their families associated with epilepsy‐related risks, specifically sudden unexpected death in epilepsy; and developing and conducting surveys to capture trends in knowledge, awareness, attitudes, and beliefs about epilepsy over time and in specific population subgroups. For each research priority selected, examples of research are provided that will advance the field of epilepsy and improve the lives of people with epilepsy. The IOM report has many other research priorities for researchers to consider developing to advance the field of epilepsy and better the lives of people with epilepsy.

Magnetic resonance imaging (MRI) and electroencephalographic (EEG) findings in a cohort of normal children with newly diagnosed seizures.

In the initial assessment of children with new-onset seizures, the suggestion that electroencephalography (EEG) should be standard and that magnetic resonance imaging (MRI) should be optional has been questioned. The purposes of this study were to (1) describe the frequency of EEG and MRI abnormalities and (2) explore relationships between MRI and EEG findings to determine their relevance in the assessment of children with new-onset seizures who are otherwise developing normally. As part of an ongoing, prospective study of children with new-onset seizures, we studied 181 children (90 girls and 91 boys). Children were entered into the study within 3 months of their first-recognized seizure. The association between EEG and MRI abnormalities was explored using a chi-square test. Abnormal MRI findings were found in 32.6% (n = 59) of the sample. The EEG and MRI results agreed with respect to classification into normal or abnormal in 37% (n = 67). Of the 50 children with a normal EEG, however, 21 (42%) were found to have an abnormal MRI. We found an unexpectedly high frequency of imaging abnormalities in our sample of otherwise normal children, although the significance of these findings is not clear. Follow-up of these patients will help us interpret the importance of the abnormalities. Despite our relatively small sample, however, our findings indicate that a normal EEG does not reliably predict a normal MRI in children with first seizures. (J Child Neurol 2006;21:490—495; DOI 10.2310/7010.2006.00127).

Children with epilepsy: quality of life and psychosocial needs.

In this chapter, research related to quality of life in children with epilepsy and their psychosocial needs is reviewed. Nursing and nonnursing research reports and descriptions of instruments developed between January 1994 and February 1999 are included. Most research reports described quality-of-life problems, especially psychological functioning in school-age children. Less attention was devoted to psychosocial needs. Major gaps included intervention studies and research on infants and young children. Conclusions include recommendations for future research.

PSYCHOSOCIAL CARE NEEDS OF CHILDREN WITH NEW-ONSET SEIZURES

&NA; The Child Report of Psychosocial Care Scale was used to measure childrens satisfaction with health care received, need for information and support and seizure‐related concerns and fears in children with new‐onset seizures. The sample of 63 children (33 girls and 30 boys), 8–14 years, completed the scale two times, 3 months and 6 months after their first seizure. Results indicated that children need the most nursing care in two areas: information related to the seizure condition, especially managing their condition, and support, in the form of talking to other children with seizures. The scale provides direction for tailored nursing interventions that will meet the specific needs of children with seizures for information and support.

Family Adaptation to a Child’s Chronic Illness

Approximately 10% to 15% of children under 18 years of age have a chronic physical illness or condition (Perrin, 1985). According to Gortmaker (1985), the number of children with chronic conditions has increased substantially in recent decades. Nursing is one of many disciplines that is actively investigating how family members adapt to a chronic health condition in a child. In this chapter research in the nursing literature related to family adaptation to a chronic illness or disability in a child is reviewed. Theoretical approaches,