Authors :
Presenting Author: Steve Chung, MD – University of Arizona, Banner–University Medical Center
Steven Wolf, MD – Boston Children's Health Physicians; Westchester Medical Center Health Network
Jeff Carter, PhD – PRIME Education
Melissa Rodriguez, MPH – PRIME Education
Laura Simone, PhD – PRIME Education
Kali Olson, PharmD – PRIME Education
Steve Chung, MD – University of Arizona
Rationale:
While the onset of Lennox-Gastaut syndrome (LGS) begins in childhood, its variable and evolving presentation and similarities with other seizure disorders often results in delayed diagnosis into adulthood. Moreover, adults with LGS often experience different symptoms from childhood, necessitating the need for renewed screening and personalized treatment selection to optimize care. Clinical teams caring for adult patients with refractory seizures in long-term care facilities (LTCFs) are poised to play a key role in advancing recognition of and improving outcomes for those with undiagnosed LGS.
Methods:
This initiative aimed to support LTCF teams in improving the identification of adults with LGS and increasing their connection to specialized care. Between October and November 2024, expert-led clinical workshops were conducted at five LTCFs and focused on screening, treatment, and referral practices for adults with refractory seizures with suspected LGS. Teams developed action plans and completed 3-month follow-up surveys to assess sustainable practice changes. Insights from LTCFs were shared via an online educational video to extend reach to additional healthcare teams.
Results:
A total of 71 healthcare professionals (HCPs) participated in the LTCF clinical workshops. Uncertainty in identifying patients who need to be assessed for LGS was the top barrier to referral to specialized care (39%). Challenges in identifying adult LGS mainly stemmed from patients’ limited ability to communicate symptoms and HCPs’ self-reported unfamiliarity with the clinical characteristics of LGS and the need for additional seizure screening/workup (Figure 1). The workshops improved HCP confidence in recognizing the clinical characteristics of LGS (Pre; 48%, Post; 90%, [Likert 3/4/5], p< 0.001), and familiarity with LGS treatment options (Pre; 39%, Post; 91%, [Likert 3/4/5], p< 0.001). HCPs committed to prioritizing screening patients with refractory seizures (35%) and differentiating LGS symptoms from other conditions (20%). Action plans included integrating evidence-based screening protocols, increasing symptom documentation, and streamlining multidisciplinary communication and referral practices. Follow-up surveys (N=15) demonstrated sustained practice change, with improvement in screening, communication channels for reporting symptoms, and establishing referral workflows. HCPs nationwide who engaged in the educational video (N=565) reported similar barriers and plans for care improvement.