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Method considerations and study protocol for a Nordic multi-centre prospective study on outcomes in rare paediatric
Jesper Reinholdson1, Kristina Malmgren1,2, John Chaplin3
1Department of Clinical Neuroscience, Institute of Neuroscience and Physiology, Sahlgrenska Academy at Gothenburg University, Gothenburg, Sweden.
Acta Paediatrica (Oslo, Norway : 1992)
|January 28, 2023
Summary
This study outlines a Nordic research protocol for pediatric epilepsy surgery, focusing on seizure and non-seizure outcomes in young children and adolescents. It aims to improve understanding of cognitive and quality-of-life results following various epilepsy surgeries.
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.
