Surveillance of epilepsy and prevention of epilepsy and its sequelae: lessons from the Institute of Medicine report

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Purpose of review

The Institute of Medicine's report, Epilepsy across the Spectrum: Promoting Health and Understanding contains two recommendations for increased epilepsy surveillance and one recommendation on prevention in epilepsy. Evidence supporting these recommendations and the information that can be gained from them is reviewed.

Recent findings

Existing epilepsy surveillance data are inadequate to address factors such as seizure type, syndrome, socioeconomic status, and race/ethnicity in large representative populations. Ongoing surveillance is needed with follow-up of people with epilepsy for adverse epilepsy outcomes so that interventions to prevent these outcomes can be formulated. Substantial barriers to receiving appropriate medical care exist for minorities and the uninsured with epilepsy; more information on these differences and their causes is needed. Lack of standardized study methods and data sources results in differences in medical service costs, care and treatments, and limited information on cost-effectiveness of specific healthcare services for epilepsy.


Future epilepsy surveillance should track incidence and prevalence over time, access to epilepsy care, direct and indirect costs, and the cost-effectiveness of treatment. Prevention efforts to decrease the occurrence of epilepsy and improve access and effectiveness of care will ameliorate adverse outcomes in epilepsy.

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