For one in 100 children in Texas, something as simple as riding a bike or sleeping on the top bunk bed might seem like an impossible dream. They live with epilepsy, a neurological disorder characterized by seizures, which make many standard childhood activities dangerous — and for about a fifth of these children, needed care remains out of reach.
Dave Clarke, M.D., professor at Dell Medical School’s departments of Neurology and Pediatrics, is working to change that. He and an interdisciplinary team at Dell Children’s Medical Center of Central Texas are focused on local epilepsy care, aiming to more quickly connect pediatric patients with the care they need.
“We have two big hurdles to tackle,” says Clarke, who is also director of the Dell Children’s Comprehensive Epilepsy Program, and a team member in the UT Health Austin Pediatric Neurosciences at Dell Children’s, a collaborative partnership between the two entities. “The first is expediting the time it takes for a patient to receive care from advanced experts. The second is addressing sociodemographic and geographic disparities in care.”
The National Association of Epilepsy Centers recognizes four levels of accredited care centers, with Level 4 centers — which Clarke says are few and far between — providing intensive treatment and surgery that many young patients need. And time is of the essence: If the time from diagnosis to medical management of epilepsy in children takes longer than a month, there can be serious ramifications. Yet factors like socioeconomic status, insurance and physical distance from Level 4 care centers stand in the way.
“Patients of color in particular experience significantly reduced access to care,” Clarke says. “I recently completed a study that found if a person is Black, the time it takes to get epilepsy surgery may be up to twice as long as that of a non-Hispanic white patient.”
‘Leapfrogging’ the Problem
To reach the patients epilepsy disproportionately impacts, such as children in rural areas and those experiencing barriers to care locally, Clarke’s team is looking to capitalize on the benefits of telemedicine — which is now on the rise across specialties due to limitations posed during COVID-19.
Analyzing electroencephalogram (EEG) test results requires specific training, and specialized epileptologists aren’t always within reach. So with colleagues from across Central Texas, Clarke and his team are engaging primary care doctors like pediatricians to use telemedicine practices and novel investigative devices so that patients can be analyzed and treated more quickly.
“The magic of the whole thing is working directly with a pediatric group to deliver virtual care,” Clarke says. “We are working toward that goal of initiating necessary medications within a month of diagnosis. This problem of access to care has been around for decades, but now we’re leapfrogging this issue; increased telemedicine is a positive change coming out of the madness of this pandemic.”
The team is also conducting research to better understand the more structural medical processes that impact pediatric epilepsy patients. In order to increase access to care across Texas and the U.S., researchers need to pinpoint the “hiccups” in Central Texas in comparison to national trends.
To do this, the team will analyze five years’ worth of patient data, looking for delays in hospital admittance and how they compare to national trends. The analysis will happen in collaboration with working groups of local experts in numerous fields: neurogenetics, public health and engineering, to name a few.
“In order to take care of everyone, we have to start at home here in Austin,” Clarke says. “We want to become the model for change. We’re thinking like a startup, working with the best people and the best ideas. This is too important a cause to think linearly.”
A Crucial Gift
Dell Med’s pediatric epilepsy team has achieved these efforts with support from a $2.75 million gift from Loretta and Jeff Clarke. The gift is split into two parts: $1 million is set aside to immediately fund care accessibility and delivery; the rest will fund an endowment that supports researching access to care in Central Texas.
“Sometimes epilepsy affects everyday things, like being able to learn to drive or participate in certain types of activities,” Loretta says. “So maybe they’ll get to do those things as a result of being diagnosed and getting treatment.”
Loretta’s own experience with epilepsy — and witnessing Dave’s passion and dedication — inspired the Clarkes’ gift. The couple is not related to Dave Clarke.
“Our work until now has just been laying the groundwork, or the roots,” Dave says. “Thanks to the Clarkes, we can now grow from those roots and bring this work into fruition. From there, we hope to become a model of care both nationally and internationally.”