To Örebro University

Purpose: To describe the long-term prognosis of childhood epilepsy in general, with special emphasis on seizure remission, relapse, medication, associated neurological impairment, mortality rate, cause of death, the experience of a childhood diagnosis of epilepsy and its consequences for the experiences of daily life.

Methods: A prospective longitudinal study on a population-based total cohort of 195 children with epilepsy in 1962-1964. Data were collected from medical records, questionnaires and additional interviews were conducted. 

Results: Follow-up data from 94% of the initial cohort showed the best long-term prognosis for seizure freedom for children with no intellectual or neurological impairment. These children had later seizure onset, shorter total duration of epilepsy and, they were more often medication free. Generalized, rather than focal, epilepsy had a better outcome. 

Ninety per cent, with onset during the inclusion period 1962-1964, were seizure-free after 50 years. No one in this group died in SUDEP. The standardized mortality ratio (SMR) was 2. 61. Death at young age was due to neurological impairment or epilepsy-related conditions whereas later deaths often followed non–epilepsy-related conditions. Few persons reported that the childhood diagnosis of epilepsy had affected their choice of education, work or leisure activities. However, 20% reported that the diagnosis had caused problems in school or at work and had restricted their activities of daily living. Almost all reported no anxiety (82%) and no depression (90%). The interviews revealed a good balance between ‘Controlling and managing the situation’ and ‘Not being restricted by the condition’.

Conclusion: This 50-year, long-term, follow-up of a cohort of persons with childhood epilepsy in general demonstrates a better outcome for seizure freedom, relapses and minor consequences for education, work and leisure activities than earlier reported. Most of the participants had developed strategies to manage their situation.