Diagnostic Delay for Focal Epilepsy Is Significantly Longer in Children and Adolescents

Retrospective analysis of data from the Human Epilepsy Project, showed time to diagnosis of epilepsy in people with focal seizure onset before vs after age 18 years was a median 340 vs 207 days (P=.012). For those who had only nonmotor focal seizures, the mean time to diagnosis was 1,019 vs 519 days (P=.02) for those with onset before vs after age 18. Those with onset before age 12 years had longer delays than those age (P=.004), and delays were also longer in people with onset before vs after age 24 (P=.03). 

For those with onset of nonmotor seizures in childhood or adolescence, 69% of eventually developed motor seizures. These individuals had the longest delays in diagnosis compared with people who had only nonmotor or only motor seizures (median 1615 vs 221 vs 61 days; P<.0001 for both comparison). Injuries occurred over 10 times more frequently in those who eventually developed motor seizures (54.9% vs 4.3%; P<.001).  

Dr. Jacqueline French, MD, principal investigator of the study and professor in the Department of Neurology at NYU Grossman School of Medicine said, "There are consequences to delayed diagnosis. Not only is there worsening of epilepsy without treatment and the effects of more seizures over time on the brain, the risk of injuries is also significantly increased. For example, approximately 5% of people in this study had car accidents before diagnosis and 84% of those accidents were in people who had nonmotor seizures."  

A lack of awareness about nonmotor seizures in general as well as children and adolescents' inability or reticence to discuss symptoms such as feeling "strange" or "out of sorts" is thought to be among the reasons for these diagnostic delays. Sometimes when children or adolescents do describe such symptoms, it is misattributed to a behavioral issue. Delays in diagnosis may also come from difficulty access pediatric neurology specialists with greater expertise in diagnosing these more subtle seizures. 

Dr. Monica Ferrer, MD and neurology resident at NYU Grossman School of Medicine suggests using a 5S mnemonic to drive awareness and understanding that consists of:  

• Short
• Sudden
• Similar
• Strange
• Spells

Dr. Ferrer also noted, “Fast and accurate diagnosis of these more subtle seizures is vital to prevent seizure-related injuries, especially those due to automobile or other vehicle accidents. We see this as a critical area for public health campaigns about recognition of the seizures, as has been done for stroke with the FAST (face, arm, speech, time) mnemonic. We encourage pediatricians, emergency physicians, and general neurologists to ask patients about the 5S of focal nonmotor seizures.  

This was a retrospective analysis of data from the Human Epilepsy Project, a multisite international study of participants age 12 or more who enrolled within 4 months of their diagnosis with focal epilepsy. At enrollment, participants started a seizure diary that also asked about seizure history including onset of seizures. Of 444 records reviewed, 121 participants had seizure onset before age 18 and 323 had seizure onset after age 18. 

These data were presented at the American Epilepsy Society (AES) Annual Meeting, held December 3-7, 2021 in Chicago, Illinois and virtually through AES 2021 Digital Select.