Browsing by Author "Austin, Joan"

Now showing 1 - 6 of 6
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    Long‐term characterization of behavior phenotypes in children with seizures: Analytic approach matters
    (Wiley, 2025) Morales, Karina; Harvey, Danielle; Dunn, David; Jones, Jana; Byars, Anna; Austin, Joan; Hermann, Bruce; Oyegbile-Chidi, Temitayo; Psychiatry, School of Medicine
    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. Methods: Three hundred twelve participants (6-16 years old) were recruited within 6 weeks of their first recognized seizure along with 223 unaffected siblings. Each child's behavior was recorded by parents and teachers frequently over 36 months using the Child Behavior Checklist (CBCL), and each child completed self-report measures of depression symptoms over 36 months. Measures were evaluated cross-sectionally and longitudinally to identify clusters with prototypical behavioral trajectories. Results: Cross-sectional analyses exhibited a pattern of generalized and undifferentiated behavioral problems compared to sibling controls at baseline and prospectively. In contrast, latent trajectory modeling identified three distinct behavior phenotype clusters across all raters (parents, teachers, and youth) over baseline and longitudinal assessments. CBCL Cluster 1 (~30% of youth with epilepsy) exhibited behavior similar to/better than controls, Cluster 2 (~50%) exhibited moderate behavior issues, and Cluster 3 (~20%) exhibited the most pronounced/problematic behavior, falling into Achenbach's clinically relevant behavior range. Behavior within clusters remained stable and consistent. Teachers' and children's behavior assessments corresponded to these cluster groupings consistently over 36 months. Predictors of cluster membership include seizure syndrome type and social determinants of health. Significance: This study demonstrates the varying public health perspectives of behavioral risk in youth with epilepsy that result as a function of analytic approach as well as the presence of distinct latent behavioral trajectory phenotypes over time in youth with new onset epilepsy.
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    Social determinants of health associated with epilepsy treatment adherence in the United States: A scoping review
    (Elsevier, 2021-11) von Gaudecker, Jane; Buelow, Janice; Miller, Wendy; Tanner, Andrea; Austin, Joan
    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 (2005) for a scoping review. A total of in 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.
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    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
    (Wiley, 2022) Kwon, Churl-Su; Jacoby, Ann; Ali, Amza; Austin, Joan; Birbeck, Gretchen L.; Braga, Patricia; Cross, J. Helen; de Boer, Hanneke; Dua, Tarun; Fernandes, Paula T.; Fiest, Kirsten M.; Goldstein, Jonathan; Haut, Sheryl; Lorenzetti, Diane; Mifsud, Janet; Moshe, Solomon; Parko, Karen L.; Tripathi, Manjari; Wiebe, Samuel; Jette, Nathalie; School of Nursing
    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. Studies were characterized using descriptive analysis by whether they addressed "felt" or "enacted" stigma and "attitudes" toward persons living with epilepsy. Results: Of 4234 abstracts, 132 met eligibility criteria and addressed either felt or enacted stigma and 210 attitudes toward epilepsy. Stigma frequency ranged broadly between regions. Factors associated with enacted stigma included low level of knowledge about epilepsy, lower educational level, lower socioeconomic status, rural areas living, and religious grouping. Negative stereotypes were often internalized by persons with epilepsy, who saw themselves as having an "undesirable difference" and so anticipated being treated differently. Felt stigma was associated with increased risk of psychological difficulties and impaired quality of life. Felt stigma was linked to higher seizure frequency, recency of seizures, younger age at epilepsy onset or longer duration, lower educational level, poorer knowledge about epilepsy, and younger age. An important finding was the potential contribution of epilepsy terminology to the production of stigma. Negative attitudes toward those with epilepsy were described in 100% of included studies, and originated in any population group (students, teachers, healthcare professionals, general public, and those living with epilepsy). Better attitudes were generally noted in those of younger age or higher educational status. Significance: Whatever the specific beliefs about epilepsy, implications for felt and enacted stigma show considerable commonality worldwide. Although some studies show improvement in attitudes toward those living with epilepsy over time, much work remains to be done to improve attitudes and understand the true occurrence of discrimination against persons with epilepsy.
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    The Impact of Sociodemographic Disadvantage on Cognitive Outcomes in Children with Newly Diagnosed Seizures and their Unaffected Siblings over 36 months
    (Elsevier, 2023) Oyegbile-Chidi, Temitayo; Harvey, Danielle; Dunn, David; Jones, Jana; Byars, Anna; Fastenau, Philip; Austin, Joan; Hermann, Bruce; Psychiatry, School of Medicine
    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. We investigated the role of SD in cognitive status in youth with newly diagnosed epilepsy over a follow-up of 36 months to determine the degree, extent, and duration of the role of disadvantage. Methods: A total of 289 children (six to 16 years) within six weeks of their first seizure along with 167 siblings underwent comprehensive neuropsychological assessments (intelligence, language, memory, executive function, processing speed, and academic achievement) at baseline, 18 months later, and at 36 months from baseline. Baseline demographic information (race, caregivers education, household income, and parental marital status), clinical epilepsy characteristics (e.g., age of onset), and magnetic resonance imaging (MRI) and electroencephalographic (EEG) information was collected. Results: An SD index was computed for each family and categorized into four groups by level of disadvantage. In children and siblings, the least disadvantaged group exhibited the highest Full-Scale IQ, neuropsychological factor scores, and academic performances, whereas the most disadvantaged showed the polar opposite with the worst performances across all tests. Findings remained stable and significant over 36 months. Linear regression analyses indicated that disadvantage was a more constant and stable predictor of cognitive and academic performance over time compared with clinical epilepsy characteristics and MRI/EEG abnormalities. Conclusions: This study indicates the strong association between SD and cognitive/academic performance in children with newly diagnosed epilepsy and their siblings is significant and predictive of three-year cognitive outcomes.
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    The Long-term Characterization of Cognitive Phenotypes in Children with Seizures over 36 months
    (Elsevier, 2024) Eisner, Jordan; Harvey, Danielle; Dunn, David; Jones, Jana; Byars, Anna; Fastenau, Philip; Austin, Joan; Hermann, Bruce; Oyegbile-Chidi, Temitayo; Psychiatry, School of Medicine
    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. Methods: 282 subjects (6-16 years) were recruited within 6 weeks of their first recognized seizure along with 167 unaffected siblings. Each child underwent a comprehensive neuropsychological assessment at baseline, 18 and 36 months later. Factor analysis of the neuropsychological tests revealed four underlying domains - language, processing speed, executive function, and verbal memory. Latent trajectory analysis of the mean factor scores over 36 months identified clusters with prototypical cognitive trajectories. Results: Three unique phenotypic groups with distinct cognitive trajectories over the 36-month period were identified: Resilient, Average, and Impaired phenotypes. The Resilient phenotype exhibited the highest neuropsychological factor scores and academic performance that were all similar to controls; while the Impaired phenotype showed the polar opposite with the worst performances across all test metrics. These findings remained significant and stable over 36 months. Multivariate logistic regression indicated that age of onset, EEG, neurological examination, and sociodemographic disadvantage were associated with phenotype classification. Conclusions: This study demonstrates the presence of diverse latent cognitive trajectory phenotypes over 36 months in youth with new-onset seizures that are associated with a stable neuropsychological and academic performance longitudinally.
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    The Relationship Between Sleep, Cognition and Behavior in Children With Newly-Diagnosed Epilepsy Over 36 Months
    (Frontiers Media, 2022-07-26) Oyegbile-Chidi, Temitayo; Harvey, Danielle; Eisner, Jordan; Dunn, David; Jones, Jana; Byars, Anna; Hermann, Bruce; Austin, Joan; Psychiatry, School of Medicine
    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. Methods: 332 participants (6-16years) were recruited within 6 weeks of their first recognized seizure. The comparison group was comprised of 266 healthy siblings. Participants underwent sleep evaluation by a parent using the Sleep Behavioral Questionnaire (SBQ), cognitive evaluation using a comprehensive neuropsychological test battery, a behavioral evaluation using the Child Behavior Checklist (CBCL from parents and TRF from teachers) and the Children's Depression Inventory (CDI). These evaluations were completed at baseline (B), at 18 months, and at 36 months. Results: Compared to siblings, children with new-onset epilepsy had more sleep disturbance (SBQ), higher rates of behavioral problems (CBCL and TRF), lower cognitive testing scores, and higher rates of depression; which persisted over the 36-month study. Sleep significantly correlated with behavioral problems, cognitive scores and depression. When divided into categories based of sleep disturbance scores, 39.7% of children with epilepsy experienced "Persistently Abnormal Sleep", while 14.8% experienced "Persistently Normal Sleep". Children with persistently abnormal sleep experienced the highest rates of behavioral problems, depression and cognitive impairment compared to those with persistently normal sleep, regardless of epilepsy syndrome. Younger age of seizure onset, younger age at testing, and lower grade level at baseline were associated with persistently abnormal sleep. Conclusions: To our knowledge, this is the first demonstration of the nature, strength, reliability, stability and persistence of the relationship between sleep, cognition, and behavioral problems over time in a large cohort of children with newly diagnosed epilepsy, as assessed by multiple informants at different timepoints. The results of this study indicate that children with epilepsy are at a high risk of significant persisting neurobehavioral multimorbidity. Therefore, early screening for these challenges may be essential for optimizing quality of life long-term.