Abstract Introduction The management of idiopathic hypersomnia (IH) represents a significant challenge in clinical practice owing to the heterogeneity of symptoms, impact of comorbidities, and individual patient needs, goals, and preferences – all informing treatment selection and ongoing management. This initiative aimed to characterize the challenges that impede optimal IH management and identify patient-centered practices that facilitate quality care. Methods Between May 2024 and July 2025, three US-based sleep clinics participated in a quality improvement initiative. Clinics participated in audit-feedback sessions to evaluate real-world data, identify gaps in evidence-based assessment and management of IH, and develop action plans. Follow-up sessions were held to assess progress and refine action plans. Data was collected through baseline and follow-up clinician surveys and patient chart audits. Patient survey data was collected in collaboration with Hypersomnia Foundation. Results Clinicians’ (N=139) top challenge in managing IH included staying current with emerging evidence (41%), difficulties in therapy selection and dosing (33%), and identifying and managing comorbidities (31%). Most clinicians felt familiar with treatment options (55%; Likert 3/4/5) and felt confident in providing timely, evidence-based, and coordinated care (54%; Likert 3/4/5). While about half of patients (N=90) had cardiovascular comorbidities, only 59% of clinicians regularly assessed them and 41% said that managing comorbidities was a barrier to treating IH. Survey findings also revealed gaps in perceptions of shared decision-making with clinicians reporting that goals and preferences were discussed (59%) while only 35% of patients reported the same. Clinicians set goals to individualize care through evaluating the impact of comorbidities, tailoring treatment to patient-specific needs, and engaging patients in their care. Increases in counseling related to medications, comorbidities, and medication adherence were observed in a patient chart audit (N=90) as well as improvements in incorporating patient factors and patient engagement on surveys (N=25) upon follow-up. Conclusion This initiative demonstrated actionable strategies to personalize IH management through the incorporation of patient-specific factors, needs, and goals into treatment and the impact of quality improvement measures on the delivery of patient-centered care. Support (if any) This program was supported by an independent medical educational grant from Jazz Pharmaceuticals.
Zyborowicz et al. (Fri,) studied this question.