Imagine your child has many seizures every day. They have tried multiple medications, but nothing has worked. The seizures affect their ability to learn and play. You see them slipping away from you little by little every day.  Then, your neurologist offers hope through an epilepsy surgery evaluation. This surgery may improve your child’s quality of life, reducing or eliminating seizures and potentially improving their developmental trajectory.^1–3

The Stark Gap: Limited Referrals for Epilepsy Surgery

However, most families won’t be offered that hope. Some have estimated that as little as one percent of eligible people with epilepsy are referred for evaluation.^5–7

Deeper Inequities: Challenges Faced by Historically Marginalized Communities

Even worse, children belonging to historically marginalized communities face an even greater challenge, as they are less likely to be referred for surgical evaluation or may encounter significant delays when they are.^8–13 Unfortunately, as pediatric epilepsy providers, we see examples of these well documented and pervasive inequities every day in our clinical practice.

Why Access in Epilepsy Surgery Is Unequal

These disparities have many layers. Insurance coverage, language, race/ethnicity, young age, socioeconomic status, gender, and geography all impact access to epilepsy surgery care.  Causes of these disparities are also complex. These can include fear, access, communication, education (knowledge gaps of primary care providers, neurologists, and epileptologists), trust, social support, and provider bias. More research is needed to better understand root causes and assess the effectiveness of solutions.

Bridging the Gap: Education, Advocacy, and Networks

Providers and caregivers need to continue to partner together to address these disparities. Just a few of the examples of interventions that are desperately and urgently needed include14:

• Improving education on early surgery referral (for providers15, communication with patients16)
• Legislative advocacy (lobbying to decrease insurance-related barriers to care, funding for epilepsy surgery and disparities research17, helping public health officials understand the cost-effectiveness of pediatric epilepsy surgery18,19),
• Building collaborative networks of expertise between centers
• Increasing provider concordance (number of medical providers from underrepresented backgrounds20)
• Prioritizing equitable accessibility at tertiary and quaternary care centers (such as offering resources and second opinion applications in preferred languages, for example) 

Action Steps You Can Take Today

If your child has drug-resistant epilepsy, talk to your provider about an epilepsy surgery work up. Most children with drug-resistant epilepsy are candidates for an epilepsy surgery*; there are many types and options to consider (*this is not to say that all children’s epilepsy could be cured by surgery, but surgery can offer meaningful benefit to seizure frequency or quality of life).

All families should be empowered to request a second opinion, and providers should support and encourage families in these requests. The Pediatric Epilepsy Surgery Alliance provides parent support navigators that assist families in navigating this process.

Every child with epilepsy deserves equitable and timely access to high quality care. Working together, providers and caregivers start to close these equity gaps, improving the lives of children with epilepsy around the world. 

This blog post is authored by: Christina Briscoe Abath, MD EdM, Meghann Soby, LICSW, Stephanie Donatelli, MD, Aris Hadjinicolaou, MD

References

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2. Wiebe S, Blume WT, Girvin JP, Eliasziw M. A Randomized, Controlled Trial of Surgery for Temporal-Lobe Epilepsy. New England Journal of Medicine. 2001;345(5):311-318. doi:10.1056/NEJM200108023450501
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