Carol Camfield1, Peter Camfield. 1. Department of Pediatrics, IWK Health Centre, Halifax, Nova Scotia, Canada. Camfield@dal.ca
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.
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.
Authors: Anne T Berg; Jason Coryell; Russell P Saneto; Zachary M Grinspan; John J Alexander; Mariana Kekis; Joseph E Sullivan; Elaine C Wirrell; Renée A Shellhaas; John R Mytinger; William D Gaillard; Eric H Kossoff; Ignacio Valencia; Kelly G Knupp; Courtney Wusthoff; Cynthia Keator; William B Dobyns; Nicole Ryan; Tobias Loddenkemper; Catherine J Chu; Edward J Novotny; Sookyong Koh Journal: JAMA Pediatr Date: 2017-09-01 Impact factor: 16.193
Authors: Anne T Berg; Christine B Baca; Karen Rychlik; Barbara G Vickrey; Rochelle Caplan; Francine M Testa; Susan R Levy Journal: Pediatrics Date: 2016-03-16 Impact factor: 7.124