Delayed diagnosis in adolescent onset focal epilepsy: Impact on morbidity and mental health

Objective: This study was undertaken to investigate diagnostic delay in adolescent onset focal epilepsy, including reasons for longer delays and associated morbidities. Methods: Secondary analysis was done using enrollment data from the Human Epilepsy Project, a multi-institutional cohort including 34 sites in the USA, Canada, Finland, Austria, and Australia (2012–2017). Participants were aged 11–64 years at enrollment and within 4 months of treatment initiation for newly diagnosed focal epilepsy. Participants with seizure onset at age ≤ 21 years were evaluated. Data included seizure diaries documenting onset, frequency, and characteristics of seizures, reasons for diagnostic delays, and prediagnosis morbidities, including injuries, suicidal ideation, and self-injurious behaviors. Results: Of 152 participants with adolescent onset seizures, those with a diagnosis delay > 1 year experienced a median delay to diagnosis of 4.4 years and reported higher rates of initial nonmotor seizures compared to those diagnosed within 1 year (n = 55, 78.6% vs. n = 33, 40.2%; χ²₁ = 22.76, p <.001). Lack of recognition by patients and health care providers accounted for diagnostic delay in more than half (68.2%) of participants with initial nonmotor seizures. Notably, 70% of participants with initial nonmotor seizures went undiagnosed until development of motor seizures. This group reported more injuries compared to those who did not develop motor seizures (56.5% vs. 7.7%; χ²₂ = 19.82, p <.001). Those with time to diagnosis > 1 year had more prediagnostic seizures (67 vs. 5.5 seizures, 95% confidence interval = 16.0–94.0; p <.001) and higher rates of suicidal ideation (33.3% vs. 14.9%; χ²₁ = 6.27, p =.01), suicidal behaviors (13.8% vs. 1.5%; χ²₁ = 7.19, p =.007), and nonsuicidal self-injurious behaviors (13.4% vs. 1.5%; χ²₁ = 7.04, p =.008). Significance: This study highlights significant delays in diagnosing adolescent onset focal epilepsy, especially in cases with nonmotor seizures. These delays, often due to lack of recognition by patients and health care providers, are linked to more frequent seizures, higher injury rates, and increased suicidal ideation and self-injury. Early recognition and diagnosis may mitigate adverse outcomes and improve quality of life for adolescents with epilepsy.