Course and outcome of childhood epilepsy: A 15‐year follow‐up of the Dutch Study of Epilepsy in Childhood

Abstract

SUMMARYPurpose: To study the course and outcome of childhoodonset epilepsy during 15-year follow-up (FU). Methods: We extended FU in 413 of 494 children with new-onset epilepsy recruited in a previously described prospective hospital-based study by questionnaire. Results: Mean FU was 14.8 years (range 11.6-17.5 years). Five-year terminal remission (TR) was reached by 71% of the cohort. Course during FU was favorable in 50%, improving in 29%, and poor or deteriorating in 16%. Mean duration of seizure activity was 6.0 years (range 0-21.5 years), strongly depending on etiology and epilepsy type. Duration was <1 year in 25% of the cohort and exceeded 12 years in another 25%. Antiepileptic drugs (AEDs) were used by 86% during a mean of 7.4 years: one-third had their last seizure within 1 year of treatment, and onethird continued treatment at the end, although some had a 5-year TR. At last contact, 9% of the cohort was intractable. In multivariate analysis, predictors were nonidiopathic etiology, febrile seizures, no 3-month remission, and early intractability. Eighteen patients died; 17 had remote symptomatic etiology. Standardized mortality ratio for remote symptomatic etiology was 31.6 [95% confidence interval (CI) 18.4-50.6], versus 0.8 [95% CI 0.02-4.2] for idiopathic/cryptogenic etiology. Discussion: In most children with newly diagnosed epilepsy, the long-term prognosis of epilepsy is favorable, and in particular, patients with idiopathic etiology will eventually reach remission. In contrast, epilepsy remains active in 30% and becomes intractable in 10%. AEDs probably do not influence epilepsy course; they merely suppress seizures. Mortality is significantly higher only in those with remote symptomatic etiology.

Determinants of Social Outcomes in Adults With Childhood-onset Epilepsy

“…30,31 In fact, learning problems were discussed as possibly contributing to poorer outcomes in 1 study. 32 They were also associated with adverse social outcomes in the Canadian cohort, although receipt of special education services was considered a poor outcome in that study. 1 Independent of seizure course, learning problems appear to impact several important adult outcomes.…”

“…38 We were generally not able to determine the onset of psychiatric problems relative to the onset of epilepsy, although learning problems clearly did precede the onset of epilepsy in many schoolaged children. 28 We also did not compare our cohort to the general population as done in some of the older studies, 2,5,32 which demonstrated differences in people with and without epilepsy. Our purpose was to distinguish the roles of seizures from behavioral and learning problems and identify factors within young people with epilepsy that might influence adult outcomes.…”

Risk and causes of death in children with a seizure disorder

“…However, for those who advocate the importance of promoting activity, the trial results were disappointing with relatively few between-group differences. 3,4 Despite a relatively intensive intervention with 30 sessions over 3 months, the group assigned to cycling did not show greater improvements in any of the measures of body structure and function, and activity than the control group. 4 For most quality of life…”

“…It is difficult to verify these data since studies on deceased patients are by necessity retrospective and the clinical data may be scarce and inaccurate, both as to the circumstances of death as well as to the clinical details (especially after identification of such patients through the coroner's office). Here, the prospective nature of the cohort studies [1][2][3][4] compensates for their smaller number of deaths. From all studies on mortality in childhood epilepsy a clear picture now arises.…”

“…Earlier prospective cohort studies have clearly shown that in children, the unique and most important risk factor is having a symptomatic type of epilepsy (Table I). [1][2][3][4] Whereas in adults, sudden unexplained death in epilepsy (SUDEP) is a relatively frequent, albeit not well understood phenomenon, that apparently only rarely occurs in children.…”