title: Social outcomes of young adults with childhood-onset epilepsy: A case-sibling-control study.
abstract: We aimed to compare long-term social outcomes in young adults with childhood-onset epilepsy (cases) with neurologically normal sibling controls.
  
  
  
  Long-term social outcomes were assessed at the 15-year follow-up of the Connecticut Study of Epilepsy, a community-based prospective cohort study of children with newly diagnosed epilepsy. Young adults with childhood-onset epilepsy with complicated (abnormal neurologic exam findings, abnormal brain imaging with lesion referable to epilepsy, intellectual disability (ID; IQ < 60) or informative history of neurologic insults to which the occurrence of epilepsy might be attributed), and uncomplicated epilepsy presentations were compared to healthy sibling controls. Age, gender, and matched-pair adjusted generalized linear models stratified by complicated epilepsy and 5-year seizure-free status estimated adjusted odds ratios (aORs) and 95% confidence intervals [CIs] for each outcome.
  
  
  
  The 15-year follow-up included 361 individuals with epilepsy (59% of initial cases; N = 291 uncomplicated and N = 70 complicated epilepsy; mean age 22 years [standard deviation, SD 3.5]; mean epilepsy onset 6.2 years [SD 3.9]) and 173 controls. Social outcomes for cases with uncomplicated epilepsy with ≥5 years terminal remission were comparable to controls; cases with uncomplicated epilepsy <5 years seizure-free were more likely to be less productive (school/employment < 20 h/week) (aOR 3.63, 95% CI 1.83-7.20) and not to have a driver's license (aOR 6.25, 95% CI 2.85-13.72). Complicated cases with epilepsy <5 years seizure-free had worse outcomes across multiple domains; including not graduating high school (aOR 24.97, 95% CI 7.49-83.30), being un- or underemployed (<20 h/week) (aOR 11.06, 95% CI 4.44-27.57), being less productively engaged (aOR 15.71, 95% CI 6.88-35.88), and not living independently (aOR 10.24, 95% CI 3.98-26.36). Complicated cases without ID (N = 36) had worse outcomes with respect to productive engagement (aOR 6.02; 95% CI 2.48-14.58) compared to controls. Cases with complicated epilepsy were less likely to be driving compared to controls, irrespective of remission status or ID.
  
  
  
  In individuals with uncomplicated childhood-onset epilepsy presentations and 5-year terminal remission, young adult social outcomes are comparable to those of sibling controls. Complicated epilepsy, notable for intellectual disability, and seizure remission status are important prognostic indicators for long-term young adult social outcomes in childhood-onset epilepsy.
authors.affiliation: Department of Neurology, University of Colorado Anschutz School of Medicine, Aurora, Colorado, U.S.A.|Department of Neurology, University of California Los Angeles, Los Angeles, California, U.S.A.
authors.forename: Christine B
authors.initials: CB
authors.lastname: Baca
authors.affiliation: Department of Neurology, University of California Los Angeles, Los Angeles, California, U.S.A.
authors.forename: Frances
authors.initials: F
authors.lastname: Barry
authors.affiliation: Department of Neurology, University of California Los Angeles, Los Angeles, California, U.S.A.|Department of Neurology, Icahn School of Medicine at Mount Sinai, New York, New York, U.S.A.
authors.forename: Barbara G
authors.initials: BG
authors.lastname: Vickrey
authors.affiliation: Department of Psychiatry, University of California Los Angeles, Los Angeles, California, U.S.A.
authors.forename: Rochelle
authors.initials: R
authors.lastname: Caplan
authors.affiliation: Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital of Chicago and Northwestern-Feinberg School of Medicine, Chicago, Illinois, U.S.A.
authors.forename: Anne T
authors.initials: AT
authors.lastname: Berg
mesh_terms: D000203:Activities of Daily Living / Q000145:classification / Q000523:psychology; D017668:Age of Onset; D001921:Brain / Q000473:pathology; D001925:Brain Damage, Chronic / Q000175:diagnosis / Q000523:psychology; D016022:Case-Control Studies; D002648:Child; D015331:Cohort Studies; D003237:Connecticut; D004185:Disability Evaluation; D004827:Epilepsy / Q000150:complications / Q000175:diagnosis* / Q000209:etiology / Q000523:psychology*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008607:Intellectual Disability / Q000175:diagnosis / Q000523:psychology; D008279:Magnetic Resonance Imaging; D008297:Male; D009460:Neurologic Examination; D017063:Outcome Assessment, Health Care; D011379:Prognosis; D011446:Prospective Studies; D035781:Siblings / Q000523:psychology*; D055815:Young Adult
keywords: Childhood-onset epilepsy; Prognostic factors; Remission; Sibling controls; Social outcomes