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Living with epilepsy

Long-term prognosis and psychosocial outcomes

From the "Stichting Epilepsie Instellingen Nederland" (Drs. Shackleton and Kasteleijn–Nolst Trenité), Heemstede, and Department of Clinical Epidemiology (Drs. De Craen, Vandenbroucke, and Westendorp), Faculty of Medicine, Leiden University, the Netherlands.

Address correspondence and reprint requests to Dr. D.G.A. Kasteleijn–Nolst Trenité, Neurology Department, Medical Center Alkmaar, Wilhelminalaan 12, 1815 JD Alkmaar, the Netherlands; e-mail: dkasteleijn{at}planet.nl

Objective: To analyze the impact of seizures on everyday life and the long-term effects of epilepsy on health status and psychosocial outcomes.

Methods: Follow-up study was conducted of a cohort of consecutive patients newly diagnosed with epilepsy between 1953 and 1967. In 1995 (mean follow-up 34 years), 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.

Results: The response rate was 73% (116 men and 127 women); mean age was 49.9 years (SD 11.2 years). Mean age at epilepsy onset was 15 years (SD 11 years); mean duration was 24.4 years (SD 13.1 years). In total, 134 (55%; 72 men and 62 women) patients were seizure-free for the previous 5 years, and 81 patients still had seizures in the last year. One hundred twenty-seven patients were taking antiepileptic drugs, of which 51 were on monotherapy. Epilepsy patients have a positive health evaluation, comparable with the general Dutch population. 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 < 0.001). Having epilepsy at school age has a significant negative effect on learning achievement (p < 0.01). Employment status is affected less, though more epilepsy patients are unfit to work than individuals from the general population (p < 0.05).

Conclusions: Epilepsy has a marked negative impact on education and achievement in later life. Despite worse psychosocial outcomes than the Dutch population, patients with epilepsy cope well with their epilepsy, regardless of their handicaps.

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