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Long-term medical, educational, and social prognoses of childhood-onset epilepsy: a population-based study in a rural district of Japan

      Abstract

      The long-term prognosis of childhood-onset epilepsy has rarely been studied in a general population. We examined the long-term medical, educational, and social outcomes in individuals with a history of childhood-onset epilepsy aged 20 years or older in a defined area of Japan. Furthermore, the patients’ recognition of epilepsy as well as the parents’ concerns about the prognosis of epilepsy were also surveyed. After a mean follow-up period of 18.9 years, we had sufficient data on 148 surviving patients aged 20–38 years (mean, 26.0 years) and seven dead patients. The follow-up rate was 92.8%. In the overall group, the percentages of those who had had each of the following were as follows: (a) 5-year remission, 62.8%; (b) a relapse of seizures, 17.4%; (c) psychiatric complications, 2.7%; (d) mortality, 4.5%; (e) attendance at regular classes of an ordinary school during compulsory education, 71.6%; (f) entrance to high school, 65.5%; (g) employment, 67.4%; (h) marriage, 23.0%; and (i) acquisition of a driver's license, 54.7%. The educational and social variables of the control population were as follows: (e) 99.1, (f) 97.0, (g) 96.6, (h) 51.9, and (i) 94.8%. In the 99 patients of normal intelligence, the results of the same analysis were as follows: (a) 75.8, (b) 10.7, (c) 0, (d) 0.6, (e) 100, (f) 96.0, (g) 95.2, (h) 33.3, and (i) 77.8%, in contrast to the corresponding variables of the 49 patients with mental retardation, that is, (a) 36.7, (b) 44.4, (c) 8.2, (d) 12.2, (e) 14.3, (f) 6.1, (g) 20.4, (h) 2.0, and (i) 4.1%, respectively. The best predictors of seizure remission included an early response to therapy, a low frequency of seizures or an absence of status epilepticus prior to therapy, and normal mental development. As for the current awareness of epilepsy and its prognosis, nearly 40% of the patients did not know the true name of their illness, and the same proportion of parents were still anxious about the prognosis even if their children had been taken off medication. Our data show that the majority of patients with childhood-onset epilepsy have a favorable long-term medical prognosis in terms of seizure remission and psychiatric complications, whereas they have a higher mortality rate and lower levels of educational background as well as employment and marital status compared with the general population. However, except for the low marriage rate for the younger age group and the low rate of holding a driver's license, patients of normal intelligence appear to have more favorable long-term prognoses in terms of educational and social aspects as well. In Japan, individuals with epilepsy may not seek a driver's license because of the law.

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      References

        • Shalev R.S.
        • Gross-Tsur V.
        • Masur D.
        Cognitive, behavior, and academic performance in children with epilepsy.
        in: Shinnar S. Amir N. Branski D. Childhood seizures. Karger, Basal, Switzerland1995: 93-99
        • Westbrook L.E.
        Adolescents with epilepsy: a psychological and social perspective.
        in: Shinnar S. Amir N. Branski D. Childhood seizures. Karger, Basal, Switzerland1995: 179-186
        • Sillanpää M.
        Medico-social prognosis of children with epilepsy: epidemiological study and analysis of 245 patients.
        Acta Paediatr Scand (Suppl). 1973; 273: 1-104
        • Harrison R.M.
        • Taylor D.C.
        Childhood seizures: a 25-year follow-up. Social and medical prognosis.
        Lancet. 1976; 1: 948-951
        • Anneger J.F.
        • Hauser W.A.
        • Elveback L.R.
        Remission of seizures and relapse in patients with epilepsy.
        Epilepsia. 1979; 20: 729-737
        • Okuma T.
        • Kumashiro H.
        Natural history and prognosis of epilepsy: report of a multi-institutional study in Japan.
        Epilepsia. 1981; 22: 35-53
        • Sofijanov N.G.
        Clinical evolution and prognosis of childhood epilepsies.
        Epilepsia. 1982; 23: 61-69
        • Goodridge D.M.
        • Shorvon S.D.
        Epileptic seizures in a population of 6000: II treatment and prognosis.
        Br Med J. 1983; 287: 645-647
        • Matsumoto A.
        • Watanabe K.
        • Sugiura M.
        • Negoro T.
        • Takaesu E.
        • Iwase K.
        Long-term prognosis of convulsive disorders in the first year of life: mental and physical development and seizure persistence.
        Epilepsia. 1983; 24: 321-329
        • Loiseau P.
        • Pestre M.
        • Dartigens J.F.
        • Commenges D.
        • Barberger-Gateau C.
        • Cohadon S.
        Long-term prognosis in two forms of childhood epilepsy: typical absence seizures and epilepsy with rolandic (centrotemporal) EEG foci.
        Ann Neurol. 1983; 13: 642-648
        • Ellenberg J.H.
        • Hirtz D.G.
        • Nelson K.B.
        Age at onset of seizures in young children.
        Ann Neurol. 1984; 15: 127-134
        • Elwes R.D.C.
        • Johnson A.L.
        • Shorvon S.D.
        • Reynolds E.H.
        The prognosis for seizure control in newly diagnosed epilepsy.
        N Engl J Med. 1984; 311: 944-947
        • Brorson L.O.
        • Wranne L.
        Long-term prognosis in childhood epilepsy: survival and seizure prognosis.
        Epilepsia. 1987; 28: 324-330
        • Beghi E.
        • Tognoni G.
        Prognosis of epilepsy in newly referred patients: a multicenter prospective study.
        Epilepsia. 1988; 29: 236-243
        • Oka E.
        • Yamatogi Y.
        • Ohtsuka Y.
        • Ohtahara S.
        Clinical course and prognosis of childhood epilepsy.
        Acta Paediatr Jpn. 1989; 31: 259-266
        • Sillanpää M.
        Children with epilepsy as adults: outcome after 30 years of follow-up.
        Acta Paediatr Scand (Suppl.). 1990; 368: 1-78
        • Huttenlocher R.R.
        • Hapke D.C.
        A follow-up study of intractable seizures in childhood.
        Ann Neurol. 1990; 28: 699-705
        • Sander J.W.A.S.
        • Hart Y.M.
        • Johnson A.L.
        • Shorvon S.D.
        National General Practice Study of Epilepsy: newly diagnosed epilptic seizures in a general population.
        Lancet. 1990; 336: 1267-1271
        • Collaborative Group for the Study of Epilepsy
        Prognosis of epilepsy in newly referred patients: a multicenter prospective study of the effects of monotherapy on the long-term course of epilepsy.
        Epilepsia. 1992; 33: 45-51
        • Camfield C.
        • Camfield P.
        • Gordon K.
        • Smith B.
        • Dooley J.
        Outcome of childhood epilepsy: a population-based study with a simple predictive scoring system for those treated with medication.
        J Pediatr. 1993; 122: 861-868
        • Sillanpää M.
        Remission of seizures and predictors of intractability in long-term follow-up.
        Epilepsia. 1993; 34: 930-936
        • Cockerell O.C.
        • Johnson A.L.
        • Sander J.W.A.S.
        • Hart Y.M.
        • Shorvon S.D.
        Remission of epilepsy: results from the National General Practice Study of Epilepsy.
        Lancet. 1995; 346: 140-144
        • Cockerell O.C.
        • Johnson A.L.
        • Sander J.W.A.S.
        • Shorvon S.D.
        Prognosis of epilepsy: a review and further analysis of the first nine years of the British National General Practice Study of Epilepsy, a prospective population-based study.
        Epilepsia. 1997; 38: 31-46
        • Casetta I.
        • Granieri E.
        • Monetti V.C.
        • Tola M.R.
        • Paolino E.
        • Malagù S.
        • et al.
        Prognosis of childhood epilepsy: a community-based study in Copparo, Italy.
        Neuroepidemiology. 1997; 16: 22-28
        • Sillanpää M.
        • Jalava M.
        • Kaleva O.
        • Shinnar S.
        Long-term prognosis of seizures with onset in childhood.
        N Engl J Med. 1998; 338: 1715-1722
        • Hollowach J.
        • Thurston D.L.
        • O'Leary J.
        Prognosis of childhood epilepsy: follow-up study of 148 cases in which therapy had been suspended after prolonged anticonvulsant control.
        N Engl J Med. 1972; 286: 170-174
        • Hollowach-Thurston J.
        • Thurston D.L.
        • Hixon B.B.
        • Keller A.J.
        Prognosis in childhood epilepsy: additional follow-up of 148 children 15 to 23 years after withdrawal of anticonvulsant therapy.
        N Engl J Med. 1982; 306: 831-836
        • Emerson R.
        • D'Souza B.J.
        • Vining E.P.
        • Holden K.R.
        • Mellits E.D.
        • Freeman J.M.
        Stopping medication in children with epilepsy.
        N Engl J Med. 1981; 304: 1125-1129
        • Todt H.
        The late prognosis of epilepsy in childhood: results of a prospective follow-up study.
        Epilepsia. 1984; 25: 137-144
        • Bouma P.A.D.
        • Peters A.C.B.
        • Arts R.J.H.M.
        • Stijinen T.
        • Van Rossum J.
        Discontinuation of antiepileptic therapy: a prospective study in children.
        J Neurol Neurosurg Psychiatry. 1987; 50: 1579-1583
        • Shinnar S.
        • Vining E.P.G.
        • Mellits E.D.
        • D'Souza B.J.
        • Holden K.
        • Banmgardner R.A.
        Discontinuing antiepileptic medication in children with epilepsy after two years without seizures.
        A prospective study, N Engl J Med. 1985; 313: 976-980
        • Arts W.F.M.
        • Visser L.H.
        • Loonen M.C.B.
        • Tjiam A.T.
        • Stroink H.
        • Stuurman P.M.
        • et al.
        Follow-up of 146 children with epilepsy after withdrawal of antiepileptic therapy.
        Epilepsia. 1988; 29: 244-250
        • Konishi T.
        • Naganuma Y.
        • Hongo K.
        • Murakami M.
        • Yagi S.
        • Yamatani M.
        • et al.
        Discontinuation of antiepileptic drug in childhood epilepsy: evaluation of the differences between epileptic syndromes.
        Jpn J Psychiatry Neurol. 1994; 48: 239-244
        • Matricardi M.
        • Brinciotti M.
        • Benedetti P.
        Outcome after discontinuation of antiepileptic drug therapy in children with epilepsy.
        Epilepsia. 1989; 30: 582-589
        • Hauser W.A.
        • Annegers J.F.
        • Elveback L.R.
        Mortality in patients with epilepsy.
        Epilepsia. 1980; 21: 399-412
        • Kurokawa T.
        • Fung K.C.
        • Hanai T.
        • Goya N.
        Mortality and clinical features in cases of death among epileptic children.
        Brain Dev. 1982; 4: 321-325
        • Harvey A.S.
        • Nolan T.
        • Carlin J.B.
        Community-based study of mortality in children with epilepsy.
        Epilepsia. 1993; 34: 597-603
        • Cockerell O.C.
        • Johnson A.L.
        • Sander J.W.A.S.
        • Hart Y.M.
        • Goodridge D.M.G.
        • Shorvon S.D.
        Mortality from epilepsy: results from a prospective population-based study.
        Lancet. 1994; 344: 918-921
        • Nilsson L.
        • Tomson T.
        • Farahmand B.Y.
        • Diwan V.
        • Persson P.G.
        Cause-specific mortality in epilepsy: a cohort study of more than 9,000 patients once hospitalized for epilepsy.
        Epilepsia. 1997; 38: 1062-1068
        • Rodin E.
        • Rennick P.
        • Dennerll R.
        • Lin Y.
        Vocational and educational problems of epileptic patients.
        Epilepsia. 1972; 13: 149-160
        • Talent B.K.
        • Busch S.G.
        Intelligence in epilepsy: a prospective study in children.
        Ann Neurol. 1983; 14: 438-444
        • Seidenberg M.
        • Beck N.
        • Geisser M.
        • Giordani B.
        • Sackellares J.C.
        • Berent S.
        • et al.
        Academic achievement of children with epilepsy.
        Epilepsia. 1986; 27: 753-759
        • Mitchell W.G.
        • Chavez J.M.
        • Lee H.
        • Guzman B.L.
        Academic underachievement in children with epilepsy.
        J Child Neurol. 1991; 6: 65-72
        • Callanghan N.
        • Crowley M.
        • Goggin T.
        Epilepsy and employment, marital, education and social status.
        Ir Med J. 1992; 85: 17-19
        • Trostle J.A.
        • Hauser W.A.
        • Sharbrough F.W.
        Psychologic and social adjustment to epilepsy in Rochester.
        Minnesota, Neurology. 1989; 39: 633-637
        • Elwes R.D.C.
        • Marshall J.
        • Beattie A.
        • Newman P.K.
        Epilepsy and employment. A community based survey in an area of high unemployment.
        J Neurol Neurosurg Psychiatry. 1991; 54: 200-203
        • Hoare P.
        • Kerley S.
        Psychosocial adjustment of children with chronic epilepsy and their families.
        Dev Med Child Neurol. 1991; 33: 201-215
        • Westbrook L.E.
        • Silver E.J.
        • Coupey S.M.
        • Shinnar S.
        Social characteristics of adolescents with idiopathic epilepsy: a comparison to chronically ill and nonchronically ill peers.
        J Epilepsy. 1991; 4: 87-94
        • Camfield C.
        • Camfield P.
        • Smith B.
        • Gordon K.
        • Dooley J.
        Biologic factors as predictors of social outcome of epilepsy in intellectually normal children: a population-based study.
        J Pediatr. 1993; 122: 869-873
        • Jacoby A.
        • Baker G.A.
        • Steen N.
        • Potts P.
        • Chadwick D.W.
        The clinical course of epilepsy and its psychosocial correlates: findings from a U.K. community study.
        Epilepsia. 1996; 37: 148-161
        • Carlton-Ford S.
        • Miller R.
        • Brown M.
        • Nealeigh N.
        • Jennings P.
        Epilepsy and children's social and psychological adjustment.
        J Health Soc Behav. 1995; 36: 285-301
        • Jacoby A.
        Impact of epilepsy on employment status: findings from a UK study of people with well-controlled epilepsy.
        Epilepsy Res. 1995; 21: 125-132
        • Hoare P.
        The development of psychiatric disorder among schoolchildren with epilepsy.
        Dev M Child Neurol. 1984; 26: 3-13
        • Levin R.
        • Banks S.
        • Berg B.
        Psychosocial dimensions of epilepsy: a review of the literature.
        Epilepsia. 1988; 29: 805-816
        • Cockerell O.C.
        • Moriarty J.
        • Trimble M.
        • Sander J.W.A.S.
        • Shorvon S.D.
        Acute psychological disorders in patients with epilepsy: a nation-wide study.
        Epilepsy Res. 1996; 25: 119-131
        • Jalava M.
        • Sillanpää M.
        Reproductive activity and offspring health of young adults with childhood-onset epilepsy: a controlled study.
        Epilepsia. 1997; 38: 532-540
        • Crancer Jr, A.
        • McMurray L.
        Accidents and violation rates of Washington's medically restricted drivers.
        J Am Med Assoc. 1968; 205: 272-276
        • van der Lugt P.J.M.
        Traffic accidents caused by epilepsy.
        Epilepsia. 1975; 16: 747-751
        • Takeda A.
        • Kawai I.
        • Fukushima Y.
        • Yagi K.
        • Seino M.
        Epilepsy and driving in Japan: current status as investigated in a prospective survey.
        J Epilepsy. 1992; 5: 135-139
        • Thompson P.J.
        • Upton D.
        The impact of chronic epilepsy on the family.
        Seizure. 1992; 1: 43-48
        • Santilli N.
        Psychosocial aspects of epilepsy: education and counseling for patients and families.
        in: Wyllie E. The Treatment of epilepsy: principles and practice. Lea & Febiger, Philadelphia, PA1993: 1149-1162
        • Commission on Classification and Terminology of the International League Against Epilepsy
        Proposal for revised classification of epilepsies and epileptic syndromes.
        Epilepsia. 1989; 30: 389-399
        • Commission on Epidemiology and Prognosis
        International League Against Epilepsy. Guidelines for epidemiologic studies on epilepsy.
        Epilepsia. 1993; 34: 592-596
        • Leppik T.E.
        Compliance during treatment of epilepsy.
        Epilepsia. 1988; 29: S79-S84
        • Stagno S.J.
        Psychiatric aspects of epilepsy.
        in: Wyllie E. The treatment of epilepsy: principles and practice. Lea & Febiger, Philadelphia, PA1993: 1149-1162