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Abstract Introduction Narcolepsy is a rare disorder characterized by disabling excessive daytime sleepiness and signs of REM-sleep dissociation. Pediatric narcolepsy has a different clinical presentation and may be difficult assess, but still can lead to severe impairments. Due to the importance of narcolepsy and the effects on quality of life we aimed to analyze and adjust our processes for caring for pediatric patients with narcolepsy to reach 90% compliance or greater with recommended quality measures. Methods Utilizing the AASM Quality Measures, medical records were reviewed from the Children’s Wisconsin Sleep Disorders Center with a diagnosis of narcolepsy from January 2018 until May 2023. Baseline compliance with recommended quality metrics were established. Those with a compliance rate of 80% or less were selected for the four step Plan-Do-Study-Act cycle. Data was continuously collected and analyzed quarterly to track compliance and address deficiencies in current processes. Results Pre-intervention data collection from 2017-2018 had compliance of 52% in documentation of the sleepiness assessment. Practice adjustments included educating clinical staff and distributing clinic questionnaires which improved compliance to 100%. With telehealth, compliance decreased to 90% and required an adjustment to clinical providers performing the assessment. Additional changes included developing an EMR Narcolepsy template to include safety counseling and education. Utilization of telehealth allowed annual follow up to remain 90%, even if patients delayed or cancelled an annual visit. For the small population of new patients compliance fluctuated between 0-100% for initiating treatment in part due to parent scheduling and clinic availability. Conclusion It is essential to ensure proper diagnosis, prompt treatment initiation, regular follow up of symptoms and response to treatment, and safety practices for those with Narcolepsy. With simple adjustments, compliance improved, but due the COVID-19 pandemic care delivery changed. The plan was to temporarily shift to a telehealth model, telehealth enabled us more flexibility to discuss results and manage treatments when necessary. Utilization of online questionnaires through patient portals can update the EMR. Work is ongoing to further explore how technology can be used to reach patients and maintain consistent follow up. Support (if any) Internal funding provided by the Children’s Wisconsin Department of Pediatrics
Castner et al. (Sat,) studied this question.