Authors :
David Bieber, MD – Lurie Children's
Elysa Widjaja, MD, MPH – Ann and Robert H Lurie Children's Hospital of Chicago
Robert Sebunya, MD – St. Francis Nsambya Hospital
Richard Idro, MBChB, MMed, PhD – Makerere University, Uganda
Emmanuel Wegoye, MD – CURE Children's Hospital of Uganda
Humphrey Okechi, MD – CURE Children's Hospital of Uganda
Khrystyna Moskalyk, R-EEG-T, MBA – Lurie Children's Hospital
Brenda Mutonyi, . – CURE Children's Hospital of Uganda
Martha Awori, . – CURE Children's Hospital of Uganda
Presenting Author: Sandi Lam, MD MBA – Lurie Children's Hospital; Northwestern University Feinberg School of Medicine
Rationale:
Epilepsy is the most common neurologic condition in the world, with a disproportionate burden of disease in low and middle income countries (LMIC).
Appropriately-selected drug-resistant epilepsy patients with lesional epilepsy have the chance of a cure with surgery. We aimed to establish a global
neurosurgery pilot to develop a pediatric epilepsy surgery program at a pediatric hydrocephalus surgery training center in subSaharan Africa.
Methods:
An established, accredited United States electroencephalography training program was modified for web-based, real-time video-conferencing, and hands-on
training in Uganda. Development, implementation, and preliminary results of this pilot program to diagnose, identify, and treat pediatric patients with drug resistant
epilepsy were tracked and descriptive narratives provided.
Results:
Through global initiatives by ASET The Neurodiagnostic Society, online electroencephalography training was conducted for a cohort of 10 participants in Mbale, Uganda. EEG instructors in Chicago taught the interactive Zoom-based curriculum over 12 months. Regular assessments were conducted with EEG recording, troubleshooting, and interpretation. Two fellowship trained pediatric neurologists in Uganda joined the collaboration. Ugandan patients for epilepsy surgery conference discussion are identified by the team in Uganda and discussed on video conference with the US multidisciplinary team with ongoing peer mentorship. The process of surgical candidate
identification, intervention, and epilepsy outcomes are tracked. To date, 36 patients (2-16 years) have been diagnosed and referred for conference discussion. 14 patients have been treated surgically: 6 hemispherectomies for perinatal stroke, 7 lesionectomies for focal cortical dysplasia or low grade tumor, 2 temporal lobectomy. 5 surgeries are pending: hemispherectomy for Sturge Weber, hemimegelencephaly, hemispheric gray matter heterotopias. 6 month follow up shows Engel Class 1 outcomes of seizure freedom in 12/14 postoperative patients; 1 more had meaningful seizure reduction and 1 had seizure recurrence/tumor progression.
Conclusions:
Global pediatric neurosurgery extends to development of a scalable, sustainable, peer-mentored pediatric epilepsy surgery program. The work is ongoing
for knowledge and skill transfer: this model holds potential to address the disease burden of epilepsy and help elevate quality of life for patients, families,
and communities.
Funding: Funding for this project was from Project Award 1039 from the Northwestern University Havey Institute of Global Health.