Why Children Are Not Referred For Epilepsy Surgery - Asst. Prof. Juan Carlos Perez Poveda, Hospital Universitario San Ignacio, Colombia
Epilepsy surgery is an established treatment for drug-resistant epilepsy, yet many children who may benefit are not referred for evaluation. Epileptologist Asst. Prof. Juan Perez discusses paediatric epilepsy surgery across Latin America, where services have developed over decades but remain underutilised. This conversation explores how misconceptions, training gaps, and structural barriers contribute to under-referral, and what needs to change across clinical training, health systems, and policy to improve access and outcomes.
📺 Watch the Interview
🎧 Listen to the Podcast
👉 Listen on Spotify | Apple Podcasts | YouTube
This episode is sponsored by EASEE® by Precisis who’s had no influence over the editorial content or discussion. Learn more about EASEE® here.
Episode Highlights
Why children suitable for surgery are not referred
Misconceptions about epilepsy surgery among clinicians
Delays to surgical evaluation - even in high-income countries
Education gaps driving underuse of surgery globally
About Juan Perez
Juan has almost 16 years experience as a paediatric epileptologist, working in 3 separate hospitals. He leads multiple academic epilepsy symposiums and community events, is the Chair of the ILAE Latin America Executive Board, and has a masters in education for health professionals.
Full profile: Juan-Perez
Topics mentioned
surgical candidacy
referrals
treatment eligibility
clinician training
public awareness
international collaboration
Related paper
“Fellowship education in epilepsy in Latin America and Africa: Results of a survey”, Epilepsy & Behavior, https://www.epilepsybehavior.com/article/S1525-5050(24)00543-2/abstract, J.G. Burneoa et al, Nov 2024, DOI: 10.1016/j.yebeh.2024.110161
“The challenges of establishing centers for the surgical management of epilepsy in low- and middle-income countries”, Seminars in Pediatric Neurology, https://www.sciencedirect.com/science/article/pii/S1071909125000452?ref=pdf_download&fr=RR-2&rr=9e0da90bfd257863, Jorge Vidaurre et al, Jul 2025, DOI: https://doi.org/10.1016/j.spen.2025.101224
-
Trailer
00:00 Juan Carlos Perez Poveda
“Every child with drug resistant epilepsy should be considered for a comprehensive evaluation and is therefore a potential candidate for epilepsy surgery. The real barrier [is] in the society, even more importantly, among physicians. We need to stop thinking of epilepsy surgery as a last resort.”
Intro
00:22 Torie Robinson
Welcome to Epilepsy Sparks Insights. I’m your host, Torie Robinson.
Today with Epileptolgist Juan Carlos Perez we’re looking at paediatric epilepsy surgery in Colombia and across Latin America - an area many in higher-income countries don’t often see in detail.
This conversation challenges some common assumptions. Paediatric epilepsy surgery in Latin America is not new but there are major challenges around access, referral, training, and long-standing misconceptions - including within healthcare systems.
We’re going to talk about why so few children who could benefit from surgical evaluation are referred, why delays still exist globally, and why education - across clinicians, systems, and society - is critical to improving outcomes.
If you’re new here, please subscribe so you don’t miss future conversations - and let’s get into today’s episode. - presented in partnership with EASEE®, by Precisis GmbH.
What exists in Latin America already
01:14 Torie Robinson
Many of our listeners in high income countries probably have not thought much about what paediatric epilepsy surgery looks like in Colombia or across South America, Latin American countries. So what what you most want them to understand about the care, expertise and progress that already exists there?
01:32 Juan Carlos Perez Poveda
I think maybe the people living in high income countries often assume that we either don't have the capability to offer this type of treatment at all. Or that this is done in a very precarious way. However, that's not the reality. Paediatric epilepsy surgery in Latin America has been performed for decades. Admittedly, on a smaller scale. And despite our limitation, we have steadily grown over time. At the same time, there are clear differences between countries within the region. Countries such as Brazil, Argentina, Mexico, Chile, and more recently, Colombia, likely lead in performing paediatric epilepsy surgery. And this is closely related to the availability, technical resources, and most importantly, the number of training professionals.
02:33 Torie Robinson
People make presumptions about countries and continents that they're unfamiliar with, which are often very unfair and inaccurate. So it's great to hear about what you are doing in your country and across the continent. About 80% of people with an epilepsy actually are in low to middle income countries like Colombia, right? And a lot of people are shocked about that.
Why so few children are referred for epilepsy surgery
02:57 Torie Robinson
And you've also told me that only around 0.5% of children suitable for epilepsy surgery are actually referred by their neurologist as potential surgical candidates. Why is this? And could you put this percentage in context for us?
03:12 Juan Carlos Perez Poveda
The reality is that globally, about 30% of people with epilepsy, regardless of age, have a drug-resistant epilepsy. We should also remember that in United States, the patients with epilepsy can take more than 20 years to be referred to a comprehensive epilepsy program.
03:33 Torie Robinson
The same in the UK and Australasia. It's crazy, absolutely crazy. Two decades!
03:40 Juan Carlos Perez Poveda
Here in Latin America, it's a very little amount of epilepsy surgery programs. Fortunately, this delay is shortened in children, but even then, it is still represents a significant loss of time. In our cities, the situation is even more challenging as the number of institutions or specialised centres is much lower than in high-income countries.
Why neurologists don’t refer
04:06 Juan Carlos Perez Poveda
Even now, in the era of precision medicine, many people, not only in Latin America but worldwide, including healthcare professionals involved in the care of these children, still hold misconceptions of medicine, such as believing that epilepsy surgery is extremely risky or that outcomes are poor.
04:29 Torie Robinson
And why do the neurologists think this though?
04:32 Juan Carlos Perez Poveda
The neurologists who are training in institution where the epilepsy surgery is not known.
04:40 Torie Robinson
It sounds like we usually sort of “blame” (if that's the word), patients and families for not taking up the opportunity or referring themselves or looking into epilepsy surgery. But actually, in some cases, as you're saying, it can actually be the neurologist that doesn't refer a patient.
04:59 Juan Carlos Perez Poveda
The opportunity is there. Every child with drug resistant epilepsy should be considered for a comprehensive evaluation and is therefore a potential candidate for epilepsy surgery. The real barrier [is] in the society, even more importantly, among physicians. We need to stop thinking of epilepsy surgery as a last resort.
Education as the main solution
05:23 Torie Robinson
So, what are you doing though, you and your colleagues doing to try and overcome this fear amongst the clinicians?
05:29 Juan Carlos Perez Poveda
In my view, the key to addressing this barrier is education. Education on multiple levels - starting with society the neurologists, the families, the politicians, the healthcare system, All people involved in the healthcare system who are treating a child with epilepsy. Encouraging awareness about the disease, working to eliminate the stigma and making existing treatment options more visible.
06:03 Torie Robinson
Before we move on - with thanks to EASEE®, by Precisis GmbH.
06:07 Torie Robinson
Tell us a bit about the work that you're doing to try and achieve this, because you work with, for instance, charities, and you work in educating other clinicians. What else do you do?
06:19 Juan Carlos Perez Poveda
Right now, I am trying to do, or create, some campaigns to educate the people in all levels, in all cities, in all neighbourhoods, maybe in the schools. It's essential to create policy makers and the health system so they understand that if the children with drug-resistant epilepsy are evaluated early, they will very likely have better outcomes.
Outcomes, quality of life, and system impact
06:57 Torie Robinson
And improve quality of life.
06:59 Juan Carlos Perez Poveda
This will positively impact the future, their quality of life, and of their families, while also benefiting society and improving the use of the resources. And finally, but just as importantly, we need to ensure that not only Latin America but worldwide training programs for both technical and university-level health care professional include epilepsy in a much more comprehensive way. Even in medical training sometimes a single hour in the therapy program is dedicated to epilepsy.
Epilepsy is under-taught globally
07:42 Torie Robinson
That’s nuts, you know, and I've heard this in multiple countries you know it almost doesn't matter the income or GDP of the country; epilepsy is so rarely looked at enough and like you're saying we need to start from education level within universities as well (when we are training clinicians).
08:03 Juan Carlos Perez Poveda
It's totally real. It's a bad situation across the world.
08:06 Torie Robinson
We can change things slowly but surely, which you are helping us do through education, you said, and being involved in politics even. I think it's really important. We need to explain to people how this is going to benefit other people within our countries, not even solely the people with epilepsy.
You've done a couple of very related papers on this topic of education called ( I'm reading this out) “Fellowship Education in Epilepsy in Latin America and Africa: Results of a Survey” and “The Challenges of Establishing Centres for the Surgical Management of Epilepsy in Low and Middle Income Countries”. Basically, education is lacking in these geographical areas.
08:49 Juan Carlos Perez Poveda
Mm-hmm.
Building paediatric epilepsy training
08:50 Torie Robinson
But, but you are helping to create the first in Colombia academic paediatric epilepsy training program. So how are you doing this and what are you doing differently to other forms of training?
09:02 Juan Carlos Perez Poveda
Okay, in Latin America training programs for epilepsy are generally scarce and mainly are concentrated in countries like Brazil, Mexico and Argentina. There is only one formal training program in neurophysiology and epilepsy located in Bogota. Most physicians in this fight have had to travel abroad, especially into United States or Europe for training, which is also costly. The goal now is to develop more training programs for focused on Paediatric Epileptology, adapting to our logistical realities - at least at the basic level, maybe to EEG (basic), MRI, yes, you know. But relying on international institutions for access to more advanced technologies like stereo-EEG, like neuromodulation. But our role is to actively inspire the next generation of epilepsy specialists while tailoring educational curricula to fit our local realities and resource constraints.
10:23 Torie Robinson
What's a really cool, positive, constructive challenge that you are overcoming?
Progressing despite limited resources
10:33 Juan Carlos Perez Poveda
Here in, not just in Colombia, but across Latin America, we need to have resilience and persistence. We have learned to work with limited resources. While the literature are important, it is equally important to adapting to reality. And in that point, the collaboration becomes essential. We need to recognise that it's this. And we'll continue to the key tool for our development in this file. Supporting each other and continuing to benefit from international collaboration is fundamental. We have fewer opportunities to publish, but we have to keep moving forward in our day-to-day work. And also, despite the knowledge and workforce limitation, we have done well. And we will continue to grow step by step.
Closing thoughts & thanks
11:39 Torie Robinson
Thank you to Juan for such insight! A key takeaway from our chat is that the challenge is not just about whether services exist - it’s about access, referral, and capacity. Even where expertise is present, it is often limited, unevenly distributed, and difficult to reach. We also see that delays in referral are not unique to one region. Even in high-income countries, people can wait years - or even decades - to be considered for specialist evaluation. What comes through clearly though is that misconceptions around epilepsy surgery remain widespread - including within parts of the healthcare system - and that has real consequences for whether people are ever referred in the first place. This is why education matters at every level - from universities and clinical training, right through to health systems and policy. And importantly, this is also a story of gradual progress. Services are developing, training is increasing, and clinicians are working to build capacity within real constraints. There is a clear opportunity here - both locally and globally - and that’s to improve earlier recognition, referral, and access.
Thank you also to EASEE®, by Precisis GmbH, for supporting this episode.
If you found this interesting, please give it a like and subscribe, and hit the bell so that you are notified when new episodes drop. I’d also love to hear your thoughts or experiences in the comments below - I do read them! Thank you for joining us, and see you next time.