Abstract Introduction Narcolepsy greatly impacts individuals’ quality of life; however, patients experience significant barriers to diagnosis, referral, and treatment planning. This quality improvement (QI) initiative aimed to identify gaps in narcolepsy care and inform actionable strategies to improve clinical workflows. Methods Patient surveys were collected through collaboration with the Hypersomnia Foundation in August 2024 to identify real-world barriers to care. Clinician surveys and patient chart audits were completed at three US-based sleep centers to assess baseline practice patterns. Findings were then shared with the participating centers at three live audit-feedback sessions to support development of action plans based on identified gaps, and pre-/post- surveys measured impact of the session on approaches to narcolepsy care. Follow-up sessions and surveys assessed sustainability of action plan implementation. Results Among the 94 patients surveyed, 69% reported narcolepsy greatly impacting their quality of life (4 or 5 on a 5-point Likert scale), with excessive daytime sleepiness rated as the most bothersome symptom (52%). Narcolepsy strongly impacted career (71%) and family (54%) decisions. Eighty-five percent waited 1 year for diagnosis; the top barriers were delays in appointments/referrals (32%) and narcolepsy symptom distinction (31%). Patients’ top challenge to managing narcolepsy was caring for their comorbidities (53%) and they prioritized selecting treatment with low risk of side effects (58%). Only 34% felt fully on track with their treatment goals and expressed desire to discuss treatment options (55%). Following clinic-based sessions, clinicians’ (N=33) confidence in assessing narcolepsy symptoms and individualizing treatment plans based on comorbidities increased. Action plans targeted streamlining diagnosis, coordinating referrals, and patient-centered treatment planning. To achieve these goals, clinicians committed to improving communications between healthcare teams (61%), engaging patients in shared decision-making (61%), and reviewing treatment options with patients (36%). At follow-up (N=37), teams reported improved symptom assessment workflows, referral collaboration, and patient-centered engagement in treatment planning. Conclusion Patient surveys from this QI initiative uncovered key barriers patients experience in narcolepsy care, and informed team-based development of sustainable action plans focused on streamlining patient-centered approaches to symptom assessment, diagnosis, and treatment decision-making. Support (if any) This program was supported by an educational grant from Jazz Pharmaceuticals.
Thorpy et al. (Fri,) studied this question.