Team Takes a Holistic Approach to Improving Epilepsy Care in Uganda

Learning about belief systems and ideas about healing in Uganda helped Duke global neurosurgeon Tony Fuller improve epilepsy care there

“It’s a beautiful thing to see,” says Duke Neurosurgery faculty Tony Fuller, referring to the uptick in the number of neurosurgeons in Uganda over the past few years.

“There were only four neurosurgeons in the country when I first started working in Uganda a decade ago. We developed a training program and now there are eight new neurosurgeons. And there are 12 more in training now,” says Fuller, the Associate Director of the Division of Global Neurosurgery and Neurology (DGNN). In 2014, Fuller was a co-founder of DGNN, the first neurosurgery division in the United States dedicated solely to global neurosurgery and neurology.

But neurosurgery isn’t his sole focus. Fuller approaches neurological care in Uganda from a holistic — whole country — level. He visits Uganda as often as 12 times a year, his work ranging from partnering with the health ministry there and the major power company to ensure that lights stay on during neurosurgical procedures and blood can be stored in properly cooled facilities to making sure hospitals throughout the country have medications and services for patients with neurological issues.

Some of the neurological issues for which patients in Uganda need care include traumatic brain injury — a major problem due to traffic-related accidents there — as well as brain tumors and epilepsy. In fact, one jewel in the crown of Fuller’s accomplishments with his partners in Uganda is the establishment of an epilepsy clinic in Mbarara — the only dedicated epilepsy clinic in all of Western Uganda.

“Within one year, a clinic that did not exist is now seeing 400 patients. It’s only a two-room clinic but they are doing all of this work there with patients of all ages. We have one adult epilepsy provider and one pediatric provider,” Fuller says.

There is such a significant need that they are looking to expand the clinic. The physicians working there now came to the US and trained at Duke, but Fuller says he’s hoping that a program opening up in neighboring country Rwanda will be ready to train the epilepsy center’s next generation of neurologists. However, inter-country politics are a concern.

Epilepsy is a global public health concern and Fuller says the majority of cases occur in low- and middle-income countries where the treatment gap remains formidable. DGNN and its partners in Uganda recently published an epilepsy prevalence study that encompassed the whole country. The research, published in August in the journal Epilepsy & Behavior, was the largest community-based epilepsy beliefs study ever performed in a low-income country, and it included key findings around epilepsy stigma, belief systems and hospital treatment.

“Within one year, a clinic that did not exist is now seeing 400 epilepsy patients.” –Tony Fuller, Associate Director of the Division of Global Neurosurgery and Neurology at Duke

Coupled with low economic and educational status, there’s a lot of “spiritual” thinking surrounding epilepsy, and the belief that healing comes through religion and traditional care versus medical care, Fuller and his colleagues found. This type of thinking leads to a prolonged delay of biomedical care, they noted.

“Based on these findings, initiatives to increase public awareness of neurobiological causes of epilepsy and effectiveness of biomedical drug treatments may be effective in preventing delays to care, as would programs designed to facilitate cooperation and referral among traditional, faith-based, and biomedical providers,” the researchers wrote.

Fuller says, “I think that the study really highlights how a collaborative effort can truly dive deep into a topic, execute good research, and come together to not only publish but create changes in care for a specific condition in a country.”

Fuller is also a faculty contributor on a multiyear Bass Connections project at Duke that aims to design and improve healthcare provider education to reduce epilepsy care disparities in Uganda. And he worked on another Uganda 2018-2019 Bass Connections project that explored cultural and practical barriers to epilepsy care.

For more on Fuller’s work, he and his DGNN Epilepsy colleagues and their partners in Uganda recently published a series of 11 papers in a special issue of Epilepsy & Behavior called “The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda.”

By Mary Brophy Marcus; originally posted on the Duke Global Health Institute website

Learn More

• Read about the current project, Healthcare Provider Education to Reduce Epilepsy Care Disparities in Uganda.
• See how this project team is continuing to engage with global partners despite the pandemic.
• Submit a proposal for a 2021-2022 Bass Connections project by December 4.