Authors :
Presenting Author: Sonam Bhalla, MD – Emory University/ Children's Healthcare of Atlanta
Lauren Grychowski, Undergraduate student – Emory University/ Children's Healthcare of Atlanta
Tim Shrey, BS – Children’s Healthcare of Atlanta
Gwen Carr, MSN – Children’s Healthcare of Atlanta
Allyson Navia, MSN – Children’s Healthcare of Atlanta
David Wolf, MD – Emory University/ Children's Healthcare of Atlanta
Rationale:
Infantile spasms syndrome (ISS) is a severe early-onset epileptic encephalopathy that can cause long-term epilepsy and neurodevelopmental impairment. A prior study at our institution (study cohort from 2015-2019) found that only 46% of infants treated with adrenocorticotropic hormone (ACTH) and 54% with vigabatrin (VGB) responded to treatment. Follow up for these patients was often variable and inconsistent. We executed a quality improvement project to improve care and clinical outcomes of patients with ISS by implementing a standardized treatment protocol which was guided by etiology beginning January 1, 2022. This project also aimed to streamline clinical management by reducing time from treatment initiation to the first electro-clinical follow-up with a video electroencephalogram (EEG) and an epileptologist.
Methods: We conducted a retrospective chart review to evaluate treatment and follow-up of ISS at our center. A systematic PDSA (Plan-Do-Study-Act) cycle was implemented. Interventions included creating an evidence-based ISS management protocol based on etiology for spasms (Fig 1). We also aimed at scheduling the first follow-up EEG and clinic visit in an epileptologist after 2 weeks of treatment initiation. Traditional outpatient routine EEG and clinic visits were often delayed, and so intervention was modified to implement follow up in epilepsy monitoring unit (EMU) at 2 weeks. Outcomes were assessed at the first follow-up visit (2-3 weeks post-treatment initiation) and categorized as resolved (no clinical spasm and normal EEG), improved (partial response with resolution of clinical spasms but abnormal EEG) and unresolved (continued clinical spasms and no significant change in EEG).
Results:
Since protocol implementation, we achieved 100% adherence for using standardized medications at standardized dosing. From January 1, 2022, to September 1, 2022, baseline average time from admission to follow-up visit was 25.2 days (n=27). Despite our diligent coordination of care interventions, our outpatient follow-up EEG and clinic visits post-treatment were tracked at an average of 24 days from October 1, 2022, to August 1, 2023 (n=18). After shifting to follow-up in the EMU starting September 2023, this time decreased by 29.8% to 17.7 days (n=37). This declined further to 15.1 days among patients seen since May 2024, marking a 40.1% reduction from baseline (n=20). Additionally, between January 2022 and December 2024, 78.4% of infants responded to first-line treatment: 62.5% achieved resolution and 15.9% showed improvement (n=88) (Fig 2).
Conclusions:
Timely electro-clinical follow-up is essential for infantile spasms. The implementation of our standardized, etiology-driven protocol—paired with EMU-based follow-up has significantly shortened the time to follow-up and improved treatment responsiveness and standardizing care at our center. Early EMU follow-up, supported by health insurers, enables extended EEG monitoring for better detection of subtle spasms, facilitates timely treatment adjustments, and accelerates surgical evaluation for medically refractory cases, ultimately resulting in improved outcomes for this time-sensitive epileptic syndrome.
Funding: None