0843 Improving Daytime Sleepiness in Children with Narcolepsy: A Quality Improvement Initiative

Abstract Introduction Narcolepsy affects 25-100/100,000 people in the US. Daytime sleepiness associated with pediatric narcolepsy negatively impacts quality of life (QoL), academics, vocational function, and personal safety. The Epworth sleepiness scale (ESS) is a validated tool that measures daytime sleepiness. We aimed to improve daytime sleepiness in children with narcolepsy at our center using quality improvement process to increase the percentage of narcolepsy patients with at least a 30% improvement of ESS from baseline. Methods We created a multidisciplinary quality improvement (QI) team in 2019 and used standard QI methods. Key drivers included access to care, patient and family engagement in care, follow up tracking, and complete provider documentation. We conducted plan-do-study-act (PDSA) cycles and tracked progress with a run chart. Interventions included pre-visit planning tool enhancement, tracking duration between visits and missed clinic visits, contacting patients with ≥2 missed visits, tracking prescriptions, identifying patients without referrals for behavioral/psychological support, and treating comorbid sleep disorders. Process measures included the ESS completion rate and days between visits. The primary outcome measure was improvement on the ESS. A secondary outcome measure was improvement in QoL (10% improvement in the PedsQL score). Results Between 2019 and 2023, 101 patients had 605 visits. The ESS completion rate (90% pre-COVID), decreased during COVID to 57% and improved to a median of 70% in 2023. The ESS completion rate was lower for telehealth (36%) than in-person visits (90%). Pre-COVID, the median days between visits was below goal ( 200 days) at 156 days but increased to 210 days in December 2020. Approximately three years after project initiation, 62% of patients had at least a 30% improvement in the ESS score. Improvements were sustained over 16 months. Average decrease in ESS score was 9.9 points (score range: 0-24)since 1/2020. The median baseline PedsQL score was 64.7 (borderline unhealthy) and increased by 14%. Conclusion Using QI methods and multiple interventions, we increased the percentage of narcolepsy patients with at least a 30% improvement in the ESS score to 60%. Ongoing challenges include accommodating increased patient volume, reducing process variation in ESS completion, and standardizing documentation practices for ESS scores. Support (if any)