Understanding Frequency and Characteristics of Prolonged Seizures Using Seizure Diary Data
Jaya Khushalani1, Robert Moss2, Sharon Chiang3, Rebecca Burns1, Sheryl Haut4
1UCB, Smyrna, GA, USA, 2Seizure Tracker LLC, Springfield, VA, USA, 3UCSF Weil Institute for Neurosciences, San Francisco, CA, USA, 4Montefiore Medical Center, Bronx, NY, USA
Objective:
To evaluate the prevalence of prolonged seizures (PS) and associated patient-/seizure-level characteristics in a seizure diary database.
Background:
There is a lack of real-world evidence on prevalence and clinical risk factors of PS. PS can negatively impact quality of life, increase risk of injury, and progress to seizure epilepticus (SE). 
Design/Methods:
Seizures recorded by patients with ≥4 seizures of >0–<60 min duration in SeizureTracker (1/1/2015-12/31/2024), with a ≥30-day gap between first and last seizure, were identified. Seizure-level PS cohort was defined per the 2024 expert consensus panel definition as any convulsive seizure ≥2–<5 min, absence seizure ≥2–<10 min, or focal seizure ≥5–<10 min. SE cohort was any convulsive seizure ≥5 min or any focal/absence seizure ≥10 min. Patient-level cohorts were SE (patients with ≥4 SE seizures), PS (with <4 SE and ≥4 PS), and non-PS. 
Results:

Of 734,187 seizures, 5.7%, 10.9%, and 83.4% were SE, PS, and non-PS, respectively. At the seizure-level, most PS were tonic clonic (53.9%). Of 4137 patients (49.5% male, 57.7% aged ≤18 years), 25.0%, 22.3%, and 52.7% constituted the SE, PS, and non-PS cohorts, respectively. More pediatric (65.3%) than adult (34.7%) patients had PS. The frequency of tonic clonic seizures was higher for PS (79.6%) than for SE (67.5%) or non-PS (35.2%) patient cohorts. Aura was more commonly reported in the SE (36.9%) versus other cohorts (27.1% PS, 29.1% non-PS). Irregular sleep, emotional stress, medication changes, and sickness were more common in the SE and PS cohorts than the non-PS cohort. While rescue medication (RM) is not indicated for PS/SE, use of any RM was highest among SE (55.9%) and PS (42.0%) cohorts (28.1% for non-PS).

Conclusions:
This real-world data describes the prevalence of PS using patient-reported seizure diary data and may help to support recognition of patients at risk of PS or SE.
10.1212/WNL.0000000000213294
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