title: Twenty years after childhood-onset symptomatic generalized epilepsy the social outcome is usually dependency or death: a population-based study.
abstract: OBJECTIVE
  To document the adult social outcome for childhood onset symptomatic generalized epilepsies (SGE).
  
  
  METHODS
  Using the Nova Scotia population-based epilepsy cohort we identified children who developed SGE between 1977 and 1985. Social outcome for those >18 years old was assessed in 2003-5 by semi-structured interview with patients and/or caretakers.
  
  
  RESULTS
  Eighty children developed SGE, 12% of childhood epilepsy. Syndromes at onset were: SGE undefined 32 (37%), West 32 (42%), Lennox-Gastaut 4, myoclonic astatic 9, other 3. Nineteen (24%) died. Fifty-two survivors (22 women, 30 men) were 23.7 SD 3.6 years old: 46 (88%) had mental retardation; 34 (65%) continued AEDs; and 27 (51%) were unable to walk. Social outcome was good (live independently) in 7 (13%), moderate (unable to live independently but independent for most daily activities) in 15 (29%) and poor (dependent for nearly all activities) in 30 (58%). Twenty-nine (56%) remained at home, 40% in group homes or institutions. Financial dependency was marked - complete dependence on parents/state in 90%. Eleven (20%) were socially isolated, and only 7 (13%) had significant social interaction in community activities. Health was satisfactory in 49 (94%). There were no pregnancies. Only 2 were seizure-free, off AEDs, living independently and financially independent.
  
  
  CONCLUSIONS
  The social outcome of children with SGE 20 years after diagnosis is usually disappointing. One quarter die and nearly all survivors have mental retardation and are highly dependent.
authors.affiliation: Department of Pediatrics, IWK Health Centre, Halifax, Nova Scotia, Canada. Camfield@dal.ca
authors.forename: Carol
authors.initials: C
authors.lastname: Camfield
authors.forename: Peter
authors.initials: P
authors.lastname: Camfield
mesh_terms: D002648:Child; D003710:Demography; D004829:Epilepsy, Generalized / Q000453:epidemiology / Q000401:mortality* / Q000523:psychology*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D011159:Population Surveillance / Q000379:methods; D011788:Quality of Life / Q000523:psychology*; D012919:Social Behavior; D012931:Social Environment