Patient Perspective on Idiopathic Hypersomnia: Impact on Quality of Life and Satisfaction With the Diagnostic Process and Management

This work was sponsored by Jazz Pharmaceuticals, with participation of the Hypersomnia Foundation Introduction: Idiopathic hypersomnia is a debilitating central disorder of hypersomnolence characterized by excessive daytime sleepiness (EDS), severe sleep inertia, and prolonged nighttime sleep. The impacts on quality of life (QoL) and patient satisfaction with the diagnostic process and management are poorly understood. Methods: US patients with idiopathic hypersomnia completed an online survey (June 10–July 2, 2021) assessing symptoms, impact, diagnosis, and management. Results: Respondents (Nf290) were mostly female (88%) and White (88%) and were 25–44 years of age (mean, 38 years). Self-reported years to idiopathic hypersomnia diagnosis were 0–1 (31%), 1–2 (16%), 2–5 (21%), 5–10 (13%), and 10+ (19%). Overall, 67% and 61% reported unreasonable diagnostic delays and initially being misdiagnosed, respectively. Misdiagnoses were depression/anxiety (72%), sleep apnea (25%), and narcolepsy type 2 (10%). Symptoms endorsed by ≥95% of patients were EDS, reduced mental energy level and motivation for daily activities, and feeling they could never get enough sleep. Over 90% of patients endorsed statements that idiopathic hypersomnia has had a significant negative effect on their QoL, prevented them from being who they want to be, is often unrecognized and underdiagnosed, and that the idiopathic hypersomnia community is underserved. Specific QoL impacts included constant struggles maintaining relationships (65%), suicidal thoughts (34%), and the decision not to have children (25%). Nearly half (49%) reported dissatisfaction with their idiopathic hypersomnia management. Conclusion: Surveyed patients with idiopathic hypersomnia endorsed its profound negative impact on QoL and on dissatisfaction with their diagnostic journey and management.