LONGTERM PROGNOSIS AND PSYCHOSOCIAL OUTCOMES
Abstract number :
2.104
Submission category :
Year :
2002
Submission ID :
3387
Source :
www.aesnet.org
Presentation date :
12/7/2002 12:00:00 AM
Published date :
Dec 1, 2002, 06:00 AM
Authors :
Darian P. Shackleton, Dorothee G.A. Kasteleijn-Nolst Trenité, Jan P. Vandenbroucke, Rudi G.J. Westendorp. Meer & Bosch, Stichting Epilepsie Instellingen Nederland, Heemstede, Netherlands; Clinical Epidemiology, Leiden University, Leiden, Netherlands; Neur
RATIONALE: To analyze the impact of seizures on everyday life and the long term effects of epilepsy on health status and psychosocial outcomes.
The nature of epilepsy, together with the associated stigma that is deeply rooted in history, gives rise to a variety of psychosocial difficulties. Results of the few studies that evaluate the long-term impact of epilepsy show that psychosocial adjustment and competence problems persevere into later life. We studied a large cohort of newly diagnosed patients with epilepsy with a mean follow-up of 34 years.
METHODS: Follow-up study of a cohort of 1355 consecutive patients newly diagnosed with epilepsy, between 1953 and 1967. In 1995 a random sample of 333 patients received a questionnaire asking clinical and demographic information and validated measures for psychosocial outcomes. Comparisons were made with the general Dutch population, standardised for age, sex and calendar period.
RESULTS: The response rate was 73% (116 men and 127 women), the mean age was 49.9 years (SD [plusminus]11.2). Mean age at epilepsy-onset was 15 years (SD [plusminus]11), mean duration was 24.4 years (SD [plusminus]13.1). 134 patients (46% women) were at least 5-years seizure free, and 81 patients (57% women) still had seizures in the last year. 127 patients (54% women) were taking AEDs, of which 51 (51% women) were on monotherapy. Epilepsy patients have a positive health evaluation, comparable to the general Dutch population (p=NS). Fewer epilepsy patients married or had children than the general Dutch population, more patients live at home with their parents, or in foster homes or institutions (p[lt]0.001). Having epilepsy at schooling age has a significant negative effect on learning achievement (p[lt]0.01).
CONCLUSIONS: Epilepsy has a marked negative impact on education and achievement in later life, especially those with seizures at schooling age.
[Supported by: The Dutch [dsquote]Nationaal Epilepsie Fonds (NEF)[dsquote], subsidy: NEF/CLEO A-101.
Note: this study has been presented for publication to Neurology and is in the process of reviewing.As soon as it is accepted for publication we will notify this.Until now no lectures have been given using these data outside the Netherlands.It has been part of the dutch thesis of the first author in april 2002, Leiden University.]