Overcoming surgery barriers in low-resource areas

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By Joy Mazur, Epigraph intern

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Cite this article: Mazur J. Overcoming surgery barriers in low-resource areas. Epigraph 2023; 25(4): 8-11.

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As many as half of people with drug-resistant epilepsy (DRE) may benefit from surgery. However, in many lower-resource regions, establishing a surgical program requires facing multiple challenges, including stigma, lack of resources, inadequate training, and poor funding.

In 2000, about 18% of low- and middle-income countries (LMICs) reported having epilepsy surgery programs. In the decades since, several countries have established programs, but fewer than one in four LMICs can offer surgery as a treatment option today.

Epilepsy education in resource-limited areas  

“Education, education, education.”

This is Arthur Cukiert’s key to success in developing new epilepsy surgery programs in low-resource areas. Cukiert, a Brazil native and director of the São Paulo Epilepsy Clinic, recently assisted in developing an epilepsy surgery program in Paraguay.

Cukiert said that in many resource-limited areas, surgery programs not only lack technical tools, but also human resources.

“We need to reach [these countries] because the patients are there, they are not well treated, and they have no access to surgery,” he said.

To shrink the knowledge gap, neurosurgeons traditionally travel to receive education from well-established centers. At a Vietnam center established in Ho Chi Minh City in 2018, neurologists and neurosurgeons first trained as epilepsy fellows in Malaysia, Taiwan, and Korea. By 2021, 82.8% of people who underwent surgery at the Vietnam center were virtually seizure free (Engel Class I) 18 months postoperatively. About two-thirds of the surgeries were anterior temporal lobectomies.

Cukiert said that while traditional fellowships are important and relevant, neurosurgeons from established centers also should travel to new surgical programs to mentor colleagues within the limits of their resources.

Jorge Burneo, director of the epilepsy program at the Western University and London Health Sciences Center, helped to establish the first epilepsy surgery program in Peru. The center performed its first surgery in 2012, and had performed more than 60 surgeries as of 2017. Burneo said that over the past several years, Canadian and Latin American centers have developed a virtual consortium to discuss difficult cases.

“The lack of subspecialized training is probably the main reason why epilepsy surgery practice didn’t develop before,” Burneo said. “They needed that extra knowledge to advocate for an epilepsy surgery program.”

Overcoming barriers with a stepwise approach

Developing areas often partner with established centers as mentors. Experienced surgeons and experts are essential in educating new programs and supervising the first surgeries. Both Vietnam and Peru collaborated with other countries to develop their own programs, as have many other nations. These programs succeed in transferring their skillsets using information and communications technology and fellowships that sponsor training neurosurgeons to learn at a developed center.

A 2022 study outlines a plan to initiate epilepsy surgery in low- and middle-income countries using a stepwise approach, slowly building on existing knowledge and resources to establish more advanced techniques and tools.

The study recommends that new programs begin with straightforward surgical cases, such as mesial temporal lobe epilepsy with hippocampal sclerosis or certain low-grade tumors. These straightforward cases can help about 50-60% of people with drug-resistant epilepsy.

"Once you become more experienced in that, then you can start operating on the other cases," Burneo said.

Establishing connections and collaborative programs can help overcome limited resources, said Minh-An Thuy Le, a neurologist in epilepsy at Nguyen Tri Phuong Hospital and co-author of the Vietnam study.

To account for a lack of resources and personnel in individual hospitals and centers, the Ho Chi Minh City team collaborated across multiple hospitals. Each facility had a video EEG and MRI capabilities, and one had a PET scanner.

Minh-An said the team uses all available tools to identify good candidates for surgery. They hope to use technology like stereo electroencephalography (SEEG) in the future, but first must navigate barriers of cost and physician education.

The cost question

The cost of surgery varies widely. Many studies estimate cost in LMICs to be a fraction of the cost in high-income countries; however, the absolute cost in LMICs can still be expensive for most people, and some may have to pay out of pocket.

Expansion of public funding for epilepsy treatments can make surgery a more cost-effective option.

However, Cukiert said, governments may not be willing to help, even if data show that surgery is linked with positive employment and educational outcomes. In areas with limited resources, epilepsy is not often a priority for governments struggling with other pressing health concerns, such as infectious or parasitic diseases.

Advocacy from medical professionals may be key in receiving government aid. Burneo noted that when educating neurologists and neurosurgeons, mentors should focus on people with the potential to advocate for resources at the government level.

Increasing awareness

Viet-Thang Le, a neurosurgeon with the Ho Chi Minh City program, said he shared what he learned from his fellowship with his students to help change the mindset around epilepsy among medical professionals. Viet-Thang said many students do not know much about epilepsy and are ill-equipped in skills such as operating and understanding video EEG. With exposure to specialized knowledge, he said, students learn how to evaluate people with epilepsy.

Cukiert said spreading awareness to the public can make a difference. “As far as you can make the public aware, it will be easier for these countries to get their [epilepsy surgery] services ready, because the public is going to ask for it,” he said.

Fighting stigma presents an additional problem among the general population. In some cultures, epilepsy is considered a mental or psychiatric condition. Brain surgery itself also carries a stigma.

“This, I think, is the most challenging for us – to convince the patient to go for surgery,” said Minh-An. “[Many] still decide to stay with seizures.”

Maia Alkhidze, a neurologist and epileptologist at the Institute of Neurology and Neuropsychology in Tbilisi, Georgia, said having a record of surgical success is helpful in gaining trust with potential surgery candidates.

“In the beginning it was a challenge to assure the patient,” she said. “They can now more easily trust the neurosurgeon.

Success in establishment

For people with epilepsy, seizure freedom is an important determinant in quality of life. People with drug-resistant epilepsy are 15 times more likely to be seizure-free at one year when treated surgically compared with medically. A lack of surgical options may be financially, physically, and mentally detrimental.

Studies reviewing surgical trends in low-resource areas are limited, but a 2021 study that surveyed one of the first surgical centers in India found promising trends for the long term. Since 2000, the number of pediatric surgeries there had increased, and there had been significant decreases in age at evaluation and duration of epilepsy before referral.

Even without decades of experience, surgical centers in low- and middle-income countries often exhibit signs of success within several years, with encouraging postoperative seizure-free rates and quality of life comparable to those in high-income countries.

“We need to increase our efforts and money in epilepsy surgery education in all the levels,” Cukiert said. “And try to be more focused on who we are willing to help.”

This article is part of a series from Epigraph about epilepsy surgery.