Epilepsy affects 1-2% of the population. Half of all new cases arise in infancy through early adolescence. Seizure outcomes are highly varied. Epilepsy can be a life-long intractable disorder or may resolve after only a few seizures. Many individuals, however, follow a repeated remitting-relapsing course for the first several years before attaining lasting remission. Two issues relevant to evaluation, treatment, management, counseling, intervention, and potentially prevention are poorly understood: 1) More than half the adults with intractable epilepsy who are treated surgically have epilepsy of childhood onset, yet, prospective studies find few children with surgically treatable intractable epilepsy. 2) In otherwise neurologically normal adults with childhood onset epilepsy, many of whom are in remission and off medication;educational and social outcomes are impaired relative to non-epilepsy controls. Explanations for both observations are not evident in the extant literature. Firstly, data come from retrospective analyses of refractory patients only. Few data exist from children followed from onset to surgery in adulthood. Secondly, studies reporting long-term social and educational outcomes characterize only final seizure outcomes after many years thus ignoring an often complex remitting-relapsing process that evolves over >10 years as well as behavioral and psychiatric co- morbidity present from an early age, even predating the seizures. The Connecticut study is an ongoing prospective cohort of 613 children (initially 1 mo - 15 yr) recruited when first diagnosed with epilepsy (1993- 7, median follow-up ~10 years). As the cohort matures into late adolescence/early adulthood, we will pursue two lines of investigation: 1) Presence and progression of hippocampal disease, its frequency and factors that identify patients with focal epilepsy most likely to develop it;2) Correlation of seizure outcomes with psychiatric, behavioral, social, educational, and health-related quality of life outcomes, and an assessment of the extent to which psychiatric and behavioral conditions, independent of seizure variables, explain social and educational outcomes. The Connecticut study is uniquely suited to address these questions concerning the consequences of childhood onset epilepsy in young adults. The examination of hippocampal volumetry, changes in volume and T2 relaxometry will provide the first prospective information about the natural history, determinates, and early detection of the most common form of surgically treated epilepsy.

Agency
National Institute of Health (NIH)
Institute
National Institute of Neurological Disorders and Stroke (NINDS)
Type
Method to Extend Research in Time (MERIT) Award (R37)
Project #
4R37NS031146-19
Application #
8244763
Study Section
Special Emphasis Panel (ZRG1-HOP-B (02))
Program Officer
Fureman, Brandy E
Project Start
1993-01-15
Project End
2014-05-31
Budget Start
2011-06-01
Budget End
2012-05-31
Support Year
19
Fiscal Year
2011
Total Cost
$1,235,464
Indirect Cost
Name
Children's Memorial Hospital (Chicago)
Department
Type
DUNS #
074438755
City
Chicago
State
IL
Country
United States
Zip Code
60611
Altalib, Hamada H; Berg, Anne T; Cong, Xiangyu et al. (2018) Presurgical depression and anxiety are not associated with worse epilepsy surgery outcome five years postoperatively. Epilepsy Behav 83:7-12
Berg, Anne T; Levy, Susan R; Testa, Francine M (2018) Evolution and course of early life developmental encephalopathic epilepsies: Focus on Lennox-Gastaut syndrome. Epilepsia 59:2096-2105
Baca, Christine B; Barry, Frances; Vickrey, Barbara G et al. (2017) Social outcomes of young adults with childhood-onset epilepsy: A case-sibling-control study. Epilepsia 58:781-791
Berg, Anne T; Altalib, Hamada H; Devinsky, Orrin (2017) Psychiatric and behavioral comorbidities in epilepsy: A critical reappraisal. Epilepsia 58:1123-1130
Berg, Anne T; Baca, Christine B; Rychlik, Karen et al. (2016) Determinants of Social Outcomes in Adults With Childhood-onset Epilepsy. Pediatrics 137:
Baca, Christine B; Vickrey, Barbara G; Vassar, Stefanie et al. (2015) Disease-targeted versus generic measurement of health-related quality of life in epilepsy. Qual Life Res 24:1379-87
Berg, Anne T; Rychlik, Karen (2015) The course of childhood-onset epilepsy over the first two decades: a prospective, longitudinal study. Epilepsia 56:40-8
Baldin, Elisa; Hesdorffer, Dale C; Caplan, Rochelle et al. (2015) Psychiatric disorders and suicidal behavior in neurotypical young adults with childhood-onset epilepsy. Epilepsia 56:1623-8
Vickrey, Barbara G (2015) Comment: The changing practice of neurology and a look to the future. Neurology 84:2090
Moura, Lidia M V R; Mendez, Diego Yacaman; Jesus, Jonathan De et al. (2015) Association of adherence to epilepsy quality standards with seizure control. Epilepsy Res 117:35-41

Showing the most recent 10 out of 47 publications