Validation of a brief screening instrument for the ascertainment of epilepsy

Purpose: To validate a brief screening instrument for identifying people with epilepsy in epidemiologic or genetic studies. Methods: We designed a nine-question screening instrument for epilepsy and administered it by telephone to individuals with medical record-documented epilepsy (lifetime history of ≥2 unprovoked seizures, n = 168) or isolated unprovoked seizure (n = 54), and individuals who were seizurefree on medical record review (n = 120), from a population-based study using Rochester Epidemiology Project resources. Interviewers were blinded to record-review findings. Results: Sensitivity (the proportion of individuals who screened positive among affected individuals) was 96% for epilepsy and 87% for isolated unprovoked seizure. The false positive rate (FPR, the proportion who screened positive among seizure-free individuals) was 7%. The estimated positive predictive value (PPV) for epilepsy was 23%, assuming a lifetime prevalence of 2% in the population. Use of only a single question asking whether the subject had ever had epilepsy or a seizure disorder resulted in sensitivity 76%, FPR 0.8%, and estimated PPV 66%. Subjects with epilepsy were more likely to screen positive with this question if they were diagnosed after 1964 or continued to have seizures for at least 5 years after diagnosis. Discussion: Given its high sensitivity, our instrument may be useful for the first stage of screening for epilepsy; however, the PPV of 23% suggests that only about one in four screen-positive individuals will be truly affected. Screening with a single question asking about epilepsy yields a higher PPV but lower sensitivity, and screen-positive subjects may be biased toward more severe epilepsy.