Method considerations and study protocol for a Nordic multi-centre prospective study on outcomes in rare paediatric...

Area of Science:

• Pediatric Neurology
• Neurosurgery
• Epileptology

Background:

• Epilepsy surgery offers a therapeutic option for children with drug-resistant epilepsy.
• Surgical candidates often present with neurodevelopmental comorbidities.
• Prospective studies on rare surgical subgroups, particularly regarding cognitive and quality-of-life outcomes, are limited.

Purpose of the Study:

• To describe method considerations for a Nordic population-based multi-centre follow-up program.
• To present a study protocol for evaluating seizure and non-seizure outcomes in pediatric epilepsy surgery patients.
• To address the lack of data on cognitive and health-related quality-of-life outcomes in specific pediatric epilepsy surgery subgroups.

Main Methods:

• Development of a Nordic population-based multi-centre follow-up program protocol.
• Inclusion of children aged <4 years undergoing resective epilepsy surgery.
• Inclusion of children aged ≤18 years undergoing hemispherotomy, callosotomy, or surgery for hypothalamic hamartoma.

Main Results:

• The study protocol is detailed, outlining methods for data collection.
• It establishes a framework for prospective follow-up of pediatric epilepsy surgery cohorts.
• Specific outcome domains including cognitive level and health-related quality-of-life are prioritized.

Conclusions:

• This protocol addresses critical gaps in understanding outcomes for pediatric epilepsy surgery.
• It provides a robust methodology for multi-centre collaboration in rare surgical subgroups.
• The program aims to yield valuable data on comprehensive outcomes in young epilepsy surgery patients.