CDC-supported epilepsy surveillance and epidemiologic studies: A review of progress since 1994

To report progress, to identify gaps, and to plan epilepsy surveillance and research activities more effectively, the Centers for Disease Control and Prevention (CDC) Epilepsy Program has summarized findings from selected CDC-supported surveillance and epidemiologic studies about epilepsy from 1994 through 2019. We identified publications supported by CDC funding and publications conducted by the CDC Epilepsy Program alone or with partners. We included only epilepsy surveillance and epidemiologic studies focusing on epilepsy burden, epilepsy-related outcomes, and healthcare utilization. We describe the findings of these studies in the following order: 1)prevalence; 2)incidence; 3)epilepsy-related outcomes by selected demographic characteristics; 4)cysticercosis or neurocysticercosis (NCC); 5)traumatic brain injury (TBI); 6)comorbidity; 7)mortality; 8)access to care; 9)quality of care; and 10) cost. We have characterized these findings in relation to the scope of the first three domains of the 2012 Institute of Medicine report on epilepsy and its relevant first four recommendations. From 1994 through 2019, 76 publications on epilepsy-related epidemiologic and surveillance studies were identified. Over the past 25 years, CDC has expanded community, state, and national surveillance on epilepsy and supported epidemiologic studies by using multiple assessment methods and validated case-ascertainment criteria to identify epilepsy burden, epilepsy-related outcomes, and healthcare utilization in the general population or in population subgroups. Among identified research opportunities, studies on epilepsy incidence and risk factors, mortality, and cost are considered as important surveillance gaps. Other remaining gaps and suggested surveillance strategies are also proposed. Findings from this review may help epilepsy researchers and other stakeholders reference and prioritize future activities for epidemiologic and surveillance studies in epilepsy.