A decade later: a longitudinal retrospective cohort study of the clinical course of childhood-onset epilepsy in a multi-ethnic tertiary centre

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Abstract Background Epilepsy affects a significant proportion of people globally, with many cases beginning in childhood. However, there is a lack of longitudinal studies exploring the long-term outcomes and characteristics of childhood-onset epilepsy into adulthood. This study aimed to analyze the trajectory of childhood-onset epilepsy to identify particular characteristics and outcomes that could help guide future management. Methods This retrospective cohort study was conducted between June 2021 and December 2022 at adult and paediatric clinics. Participant data were obtained from medical records and corroborated through history taking during follow-up visits. Results A total of 100 participants diagnosed with epilepsy since childhood were included. The mean age of the cohort was 23.15 (SD = 8.80) years, with a mean age at epilepsy diagnosis of 3.97 years. Focal seizures were the most prevalent type (53%), with structural causes being the predominant aetiology of epilepsy. A total of 48% of participants were identified with intellectual disabilities, 24% with learning disabilities, and 32% with behavioural difficulties. Consequently, 45% required enrollment in special education institutions. We did not observe a statistically significant difference in seizure control over the 10-year follow-up period, and no analyzed factors were significantly associated with seizure control. Conclusions Childhood-onset epilepsy is associated with substantial long-term neurodevelopmental and psychosocial consequences. Our findings highlight the need for individualized, multidisciplinary management and clear, structured transition pathways from paediatric to adult neurology services. We outline several recommendations to enhance overall management as patients transition into adulthood.