Abstract Introduction Narcolepsy can significantly affect long-term outcomes and quality of life; however, the complexity of this disorder hinders timely diagnosis and treatment. This quality improvement initiative sought to uncover practice patterns and challenges to inform team-based action plans for care improvement. Methods Between October 2024 and February 2025 clinicians from three US sleep centers were surveyed and an audit of patient charts was completed. Patient surveys were collected through collaboration with the Hypersomnia Foundation to identify barriers to care. Results from the surveys and chart audits were then shared with the sleep centers at three expert-led audit-feedback sessions. Pre- and post- surveys measured the impact of the sessions on knowledge, confidence, and performance, and teams developed action plans to address identified gaps in narcolepsy care. Follow-up surveys assessed the sustainability of plan implementation. Results Clinicians’ (N=57) leading challenge to diagnosis was distinguishing narcolepsy from other conditions (61%), and 23% did not feel confident in assessing sleep disorders (1, 2, or 3 on a 5-point Likert scale). While most clinicians used the Epworth Sleepiness Scale (95% surveys, 88% charts N=120) for assessments, the narcolepsy symptom pentad was documented less frequently (37% surveys, 33% charts). The top barrier to treatment selection was balancing concurrent conditions and safety of treatments (61%). Medication adjustments/changes occurred in 64% of charts, with 19% due to treatment side effects or new/worsening comorbidities. Only 64% of clinicians felt their patients were on track to achieve their treatment goals. Following the audit-feedback sessions, clinicians (N=33) reported increased confidence in assessing symptoms, knowledge of treatment options, and selecting treatments based on patient-specific factors. Action plans targeted improving the documentation of symptoms, addressing comorbidities, reviewing treatment options, and individualizing care plans. Follow-up surveys (N=12) illustrated sustained practice change, with teams reporting increased symptom documentation, comorbidity evaluations, and personalized treatment selection. Conclusion This initiative identified key gaps in diagnosis and management of narcolepsy and its associated comorbidities, and demonstrates the utility of structured, team-based interventions as a basis for addressing these unmet needs. Support (if any) This program was supported by an educational grant from Jazz Pharmaceuticals.
Thorpy et al. (Fri,) studied this question.