Addressing geographic disparities key to improving outcomes among youths with epilepsy

Key takeaways:

• Transport, insurance, telemedicine and demographics in urban vs. rural areas challenge optimal outcomes.
• Physician and nurse-led models can offer proper epilepsy care in a transitional population.

LOS ANGELES —Multidisciplinary care and physician- or nurse-led models that eliminate geographic disparities are key to optimal outcomes for youths with epilepsy who are transitioning to adulthood, according to a speaker.

“Having organized and consistent policy in the clinic and in practice will determine how you’re going to manage transitional patients,” Susan T. Arnold, MD, adjunct professor of pediatric neurology at Yale University School of Medicine, told attendees at the American Epilepsy Society annual meeting. “And once you have that, you can begin to have meetings with your patients and begin to discuss with children and families as young as 12 or 13 years of age.”

Successful transitions, Arnold said, are built on six factors that lead to optimal outcomes in this population: patient/family satisfaction; patient safety; reduced need for ED visits; accuracy and efficacy of diagnostic testing; and with preservation of the genetic diagnosis for the individual’s particular epilepsy syndrome.

However, disparities exist in transitional care between rural and urban areas, she noted, with respect to location, transportation, access, insurance and demographics the main drivers — all of which present unique challenges to those with epilepsy progressing from adolescence to adulthood.

Solutions to geographic disparities can be addressed on a one-to-one basis by ensuring more reliable family or external transportation support and on a community level by increased advocacy for services which benefit a wide range of patient subgroups, such as veterans.

The role of telemedicine will be crucial in coalescing the care continuum gap, Arnold continued, as it eases the burden on travel as well as reducing the number of required in-person consultations. However, in certain areas of the country, internet and phone service are inconsistent, which may require regional epilepsy centers to support neurologists or primary care physicians further afield.

The transitional population in epilepsy also faces insurance issues, with young adults aged 19 to 26 years losing coverage depending on being a student, employment or finances. In urban or suburban areas, certain health systems can offer more cost-efficient coverage, but these gaps are exacerbated in rural areas where care options and physicians willing to accept all insurance plans are less frequent, Arnold said.

According to statistics from a national phone survey of those with special needs cited in the presentation, Arnold revealed that, among youth in the U.S., 26.3% of Hispanic descent, 28.7% of non-Hispanic Black and 47.6% of non-Hispanic white individuals with epilepsy receive transitional counseling. In addition, those who did not speak English have 2.45 times lower odds of receiving transitional counseling compared with English speakers.

For epilepsy centers to successfully navigate these complex issues, continuity of care including, multidisciplinary efforts, increased communication and education are required, according to Arnold. Models that promote positive outcomes for the transitional epilepsy population in clinic-based setting can be both physician and nurse-centered efforts. In both settings, pediatric and adult epilepsy needs should be considered with crossover attendance, information sharing and appointment sharing between adult and pediatric providers.

“Young people are uniquely vulnerable during a transition period, they’re more vulnerable if they live in rural or underserved areas,” Arnold said. “But we have tools to make a difference.”