Potential delays in referral and assessment for epilepsy surgery in children with drug-resistant, early-onset epilepsy.

Objective: To study potential delays in epilepsy surgery in children with drug-resistant epilepsy (DRE) of early-onset.

Methods: Medical records were reviewed from 87 children with DRE and seizure onset before age 3 years who underwent epilepsy surgery between 2006 and 2015. Information was obtained about each child's epilepsy, treatment and specific time points in management. Time intervals along diagnostic, investigative, treatment and referral pathways were calculated.

Results: Median ages at seizure onset, when seen in the epilepsy surgery program and surgery were 5.9 (IQR 10), 19 (IQR 29) and 36 (IQR 67) months; the median delay from seizure onset to surgery was 30 (IQR 67) months. Most children were promptly diagnosed, treated, investigated and seen by a pediatric neurologist. Focal abnormalities were reported on initial EEGs and MRIs in most children, and DRE developed within a median of 6.3 months from commencement of medication. There were median durations of 6.2 months between seeing a neurologist and being seen in the epilepsy surgery program, and then 6.1 months in determining surgical candidacy. Median durations from potential indications for a surgical evaluation to agreed surgical candidacy were 10 (DRE), 12 (focal MRI) and 17 (focal EEG) months. Children received a median of six antiepileptic drugs prior to surgery. Median interval from agreed surgical candidacy to surgery was only 3 months. There were longer durations from seizure onset to surgery in children needing PET (p = 0.001) and in children with seizure-free periods (p < 0.001), and shorter durations in children with a history of infantile spasms (p = 0.01).

Significance: Delays in referral of children for epilepsy surgery are reported. Delays in assessment may be specific to centralized children's hospitals in public health systems.