Patient Perspective on Epilepsy

Children with drug-resistant epilepsy face a complex set of challenges that go beyond seizure control. These include delayed diagnosis, limited access to specialty care, insufficient care coordination, and socioeconomic barriers that influence long-term outcomes. This CME/CE course centers on the patient perspective, providing healthcare professionals with an empathetic, systems-level view of epilepsy care through the lens of equity and advocacy.

The course highlights the lived experience of families managing drug-resistant epilepsy and the medical, emotional, and logistical toll of the condition. Participants will explore how delayed diagnosis, underutilization of surgical evaluation, and lack of access to specialized epilepsy centers disproportionately affect underserved populations.

Timely surgical referral and comprehensive care planning are emphasized as key opportunities to reduce seizure burden and improve developmental outcomes. Learners will gain insight into healthcare disparities that influence treatment pathways—including insurance coverage limitations, geographic barriers, racial and ethnic disparities, and fragmented care models.

Through discussion of care navigation, patient advocacy, and interdisciplinary collaboration, the course equips providers with actionable strategies to address systemic inequities. Emphasis is placed on building trust with families, coordinating timely evaluations, and ensuring equitable access to surgical options and long-term epilepsy care.

This course empowers physicians, nurses, and advanced practice providers to become advocates for vulnerable patients, ultimately promoting earlier intervention, better care experiences, and more equitable health outcomes in pediatric epilepsy.

Educational Objectives

• Identify disparities in care access for children with drug-resistant epilepsy and their impact on treatment outcomes.
• Understand how early diagnosis and timely surgical referral influence long-term developmental and seizure outcomes.
• Explore patient-centered and systemic strategies to address healthcare inequities and promote equitable epilepsy care.

Who Should Do This Course?

This course is intended for:

• Neurologists and Epileptologists caring for pediatric epilepsy patients with complex needs.
• Pediatricians and Family Medicine Physicians monitoring developmental delays or treatment-resistant seizures.
• Emergency Medicine Providers involved in seizure triage and referral decisions.
• Neurosurgeons involved in surgical planning and evaluation for epilepsy surgery.
• Nurse Practitioners, Physician Assistants, and Community Nurses supporting continuity of epilepsy care.

This course is especially valuable for providers in underserved, rural, or community-based settings where access disparities are most prominent.

Did You Know?

• One-third of children with epilepsy have drug-resistant seizures. (Epilepsy Currents, 2022)
• The median delay in surgical referral for drug-resistant epilepsy in children is over 5 years. (Neurology, 2018)
• Black and Hispanic children are significantly less likely to be referred for epilepsy surgery evaluation. (Pediatrics, 2020)
• Early epilepsy surgery is associated with improved cognitive and developmental outcomes. (JAMA, 2017)
• Caregiver advocacy plays a critical role in accessing specialized epilepsy services. (Epilepsy & Behavior, 2021)