Twenty years after childhood‐onset symptomatic generalized epilepsy the social outcome is usually dependency or death: a population‐based study

Abstract

Aims: 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. Conclusion: 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.