Seizure reporting in older patients with developmental and epileptic encephalopathies: A retrospective review of ambulatory video-EEG reports

Purpose

Accurate seizure reporting is crucial for assessing treatment efficacy and guiding acute management in developmental and epileptic encephalopathies (DEEs). This study evaluates the sensitivity and positive predictive value (PPV) of seizure diaries compared to ambulatory video-EEG reports.

Methods

This retrospective cohort study (2018–2024) analyzed video-EEG reports from 19 Australian clinics. vEEG data were not re-reviewed. Patients with confirmed DEEs underwent 1–7 days of ambulatory video-EEG and completed seizure diaries. Sensitivity (proportion of true seizures correctly recorded) and PPV (proportion of diary events confirmed as seizures) were compared to neurologist-reported vEEG events. Demographic and clinical data were also collected.

Results

The study included 108 recordings from 65 patients with Lennox-Gastaut Syndrome (LGS), 10 with Dravet Syndrome, and 33 with other/unspecified DEEs. The cohort was 51 % female, with a median age of 15 years (range 5–63). In LGS and other DEEs, higher reporting of non-epileptic events correlated with fewer true seizure recordings. While many participants achieved a sensitivity or PPV of 1, few achieved both. No significant group-level differences in sensitivity or PPV were found across diagnostic categories.

Conclusion

Seizure diaries show variability in accurately capturing seizure activity in DEEs, with over-reporting of non-epileptic events and under-recognition of true seizures. These findings highlight the need for objective tools like video-EEG to improve seizure reporting accuracy.