Browsing by Author "Austin, Joan"

Now showing 1 - 3 of 3
  • Thumbnail Image
    Item
    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.
  • Thumbnail Image
    Item
    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.
  • Thumbnail Image
    Item
    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.