This study identifies key pillars for sustainable neurosurgical program development in low- and middle-income countries (LMICs) with opportunities to increase access to neurosurgical care.
Abstract
Background
AND
Objectives
Of 50 million people with epilepsy globally, up to 10 million with lesional drug resistance epilepsy may be able to achieve seizure control with surgical options. Although multidisciplinary surgical care for epilepsy is available in high-income countries, few programs exist in low- and middle-income countries (LMICs). In 2019, a global collaboration between CURE Uganda and Ann & Robert H. Lurie Children's Hospital in the United States established a surgical epilepsy program in Uganda for the pediatric population. This study identifies key pillars for sustainable neurosurgical program development in LMICs.
Methods
Interdisciplinary health care providers from CURE and Lurie Children's who participated in the development of the surgical epilepsy program from 2019 to 2024 underwent semistructured qualitative interviews. A thematic analysis framework was used to identify themes from interviews related to program development, sustainability, and targets for future work.
Results
Nine participants were interviewed, with representation from roles of pediatric neurologist, pediatric neuroradiologist, electroencephalogram technologists, medical officer, and pediatric neurosurgeon. Thematic analysis revealed 4 themes (with subthemes) related to sustainable global surgical program development: (1) Intentional planning (integrating global policies into program development, rigorous case selection for great outcomes to build confidence for public/administrative support, defining barriers and optimizing solutions); (2) interdisciplinary collaboration (communication and trust are vital, new initiatives may require sacrifice, true partnerships allow for bidirectional learning, creative problem solving is crucial); (3) skill transfer and education (on-the-ground skill transfer needed, technology integration facilitates continuous learning, enable development opportunities for teammates); and (4) targets for future work (public education, expanding clinical capacity in LMICs, sustainable education centers, research dissemination).
Conclusion
Global collaborations create opportunities to increase access to neurosurgical care. Creating interdisciplinary programs across borders requires trust and open communication by all members. Sustainable programs can be further enabled with intentional planning, humility, and bidirectional skill transfer.
INTRODUCTION
Tuberous sclerosis complex (TSC) is a rare genetic disorder with a high prevalence of drug-resistant epilepsy. In such cases, epilepsy surgery may render 60% of suitable candidates seizure-free. Although seizure reduction may contribute to improvements in cognitive or language skills, little is known about...
Kevin Pearsson, Mikaela Selby, Ellen C. Broekhuizen et al.· Epilepsy & Behavior· 0 citations
Similar children evaluated at different institutions had significant differences in the odds of not being recommended surgery, suggesting that institutional decision-making contributes importantly to surgical candidacy.
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INTRODUCTION
First seizure evaluation clinics (FSCs) provide rapid, specialized assessment of patients with a suspected new-onset seizure. Their role in identifying patients who may benefit from epilepsy surgery has not been well described. We evaluated the frequency, timing, and outcomes of epilepsy surgery among pati...
Cody L. Nathan, Stephen VanHaerents, Michael C. Oblich et al.· Epilepsy & Behavior· 0 citations
BACKGROUND AND OBJECTIVES
Transition of young adults with epilepsy to an adult health care model continues to be challenging because of many barriers. A Quality Improvement project was developed to create a roadmap to assist young adults with epilepsy in successfully transitioning from our pediatric neurology clinic to...
T. Krysiak, LeAnna Bricker, L. Fonseca et al.· Neurology Clinical Practice· 0 citations
BACKGROUND AND PURPOSE
Black Americans with epilepsy bear a disproportionate burden of disease yet are underrepresented in research. The aim of the study was to understand what living with uncontrolled epilepsy meant to a sample of Black individuals living in- and- around Richmond, Virginia.
METHODS
This qualitative...
S. Dewar, Lowell Evans, Christine M. Baca et al.· Epilepsy & Behavior· 0 citations
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