Abstract Introduction Despite advancements in the assessment and management of idiopathic hypersomnia (IH), patients encounter significant delays in diagnosis. Additionally, many patients experience residual symptoms that impact quality of life (QoL). This initiative aimed to examine barriers to IH management and develop practical approaches to address identified needs in 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 Patients’ (N=90) top barrier to IH diagnosis was delays with assessment and referral (32%) and missing appointments (28%). Clinicians’ (N = 54) reported that overlapping symptoms with other conditions was the top challenge to diagnosing IH (51%). Determining the most effective medication or combination of therapies (43%) was clinicians’ top challenge in managing patients’ symptoms. While most clinicians reported assessing treatment response to inform management decisions (64%), only 31% of patient charts (N=80) had follow-up measures such as repeat Epworth Sleepiness scale and other assessments at baseline. Moreover, most patients (69%) feel the burden of IH on QoL was high or very high (Likert 4/5) with many experiencing excessive daytime sleepiness (44%) and sleep inertia (44%) despite treatment. Clinicians’ (N=139) set goals to screen and assess for IH earlier, increase follow-up assessment and regularly review treatments. Substantial improvements were observed in the documentation of follow-up measurements as well as counseling and services related to symptoms and QoL on follow-up chart audits (N=90). Conclusion This initiative demonstrated actionable strategies to improve IH evaluation, treatment, and follow-up care through evidence- and team-based approaches. Support (if any) This program was supported by an independent medical educational grant from Jazz Pharmaceuticals.
Zyborowicz et al. (Fri,) studied this question.