Physician Perspective on Idiopathic Hypersomnia: Awareness, Diagnosis, and Impact on Patients

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, severe sleep inertia, and prolonged nighttime sleep. Idiopathic hypersomnia awareness is believed to be low, and diagnosis may be delayed by years. Methods: US physicians (in practice for ≥2 years; treated ≥2 patients for idiopathic hypersomnia, ≥2 patients for narcolepsy) completed an online survey (February 5–12, 2021) assessing familiarity with idiopathic hypersomnia and understanding of the diagnostic process and impact on patients’ lives. Results: There were 305 respondents (62 primary care physicians, 67 neurologists, 82 psychiatrists, 90 pulmonologists, and 4 sleep specialists). Mean years in practice was 16.6, and median number of patients with idiopathic hypersomnia was 30. Overall, 48% of physicians reported being extremely familiar with idiopathic hypersomnia; 64% agreed that most healthcare providers have an insufficient understanding of idiopathic hypersomnia. Fewer than half (46%) considered the diagnostic process for idiopathic hypersomnia to be clear, a lower proportion compared with other sleep disorders. Most considered the diagnostic process challenging (strongly/somewhat agree, 87%) and agreed that patients with idiopathic hypersomnia are often misdiagnosed (strongly/somewhat agree, 90%) and the negative impact of idiopathic hypersomnia is underestimated (strongly/somewhat agree, 92%). Estimated years to diagnosis of idiopathic hypersomnia were 0–1 (11%), 1–2 (32%), 2–5 (39%), 5–10 (15%), and 10+ (2%). Most considered idiopathic hypersomnia both a daytime and nighttime disorder (64%). Conclusion: The survey findings highlight the need for more physician education around idiopathic hypersomnia, its diagnosis, and its impact on patients’ lives.