Global Survey Shows Delays In Children’s Epilepsy Surgery

What was studied

This study looked at current pediatric epilepsy surgery and presurgical evaluation practices around the world. It was organized by the International League Against Epilepsy Pediatric Epilepsy Surgery Task Force.

The researchers collected group-level data from 61 epilepsy surgery programs in 29 countries across six continents. Most programs were pediatric-only. The data included all children and adolescents treated in 2023 who underwent presurgical evaluation or epilepsy surgery, for a total of 2,427 patients.

The study described ages, epilepsy duration before surgery, prior neurosurgical procedures, epilepsy syndromes, and which presurgical tests were used. It also compared patterns across world regions.

What they found

On average, children were about 9 years old at surgery, and mean epilepsy duration before surgery was 5.3 years. A small share had surgery before age 1 (3.2%), and 6.1% were nonpharmacoresistant at surgery.

Prior neurosurgery was reported in 14.2% of patients. Prior resections were more frequent than prior neuromodulation. Some children had developmental and epileptic encephalopathies at surgery, including Lennox-Gastaut syndrome (7.4%), infantile epileptic spasms syndrome (5.1%), and developmental and epileptic encephalopathy with spike-wave activation in sleep (1.5%).

Presurgical testing varied by region. About half had FDG-PET scans (52.6%) and nearly half had genetic testing (46.8%). MRI postprocessing was used in 32.4%. Other tests were less common overall, including fMRI (15.2%), magnetoencephalography (11.9%), SPECT (9.6%), high-density EEG (1.9%), source localization (1.6%), Wada testing (1.2%), and EEG-fMRI (0.5%). The authors noted that despite some early surgeries, mean epilepsy duration before surgery remained more than 5 years.

Limits of the evidence

This was a descriptive survey of epilepsy surgery programs, not a trial comparing treatments. It reports group-level data, so it cannot show how or why decisions were made for individual children.

The study included centers identified through ILAE networks, so it may not represent all hospitals or all countries. Regional differences may reflect differences in participating centers and local practice patterns.

The study describes presurgical evaluation and surgery patterns, but it does not report seizure outcomes, development, quality of life, or whether one testing approach was linked to better results.

For families and caregivers

For families, this study shows that pediatric epilepsy surgery and presurgical evaluation are being used worldwide, but the tests used before surgery can differ a lot from place to place. It also shows that although some children have surgery early, the average time living with epilepsy before surgery was still more than 5 years.

Genetic testing was used in nearly half of patients, and many surgical candidates had complex epilepsy syndromes. This suggests that surgery evaluation may involve more than scans and EEG alone. Still, this study does not show which centers or testing plans are best.

What to watch next

Useful next studies would link referral timing and specific presurgical tests to seizure control, development, and quality of life after surgery.

Terms in this summary

presurgical evaluation

The set of tests and visits used to help decide whether epilepsy surgery may help and what type of surgery might be considered.

drug-resistant epilepsy

Epilepsy that does not come under control after trying appropriate seizure medicines.

neuromodulation

Treatment that uses a device to send electrical signals to the nervous system to help reduce seizures.

resection

An operation that removes the part of the brain thought to be causing seizures.

FDG-PET

A brain scan that shows how different areas of the brain use sugar for energy.

fMRI

A scan that shows which brain areas are active during certain tasks, often used to help identify important functions like language.

magnetoencephalography

A test that measures magnetic signals from brain activity to help locate where seizures may start.

developmental and epileptic encephalopathy

A group of severe epilepsy conditions in which seizures and abnormal brain activity can affect development and learning.