0391 Physician Perspective on Idiopathic Hypersomnia: Awareness, Diagnosis, and Impact on Patients

Abstract

Abstract Introduction Idiopathic hypersomnia is a debilitating central disorder of hypersomnolence characterized by excessive daytime sleepiness, severe sleep inertia, and prolonged nighttime sleep. Awareness of idiopathic hypersomnia among physicians and the general public is believed to be low, and diagnosis may be delayed by years. Methods US physicians completed an online survey (February 5–12, 2021) assessing familiarity with idiopathic hypersomnia and understanding of the diagnostic process and impact on patients’ lives. Eligible physicians had been in practice for ≥2 years and had treated ≥2 patients for idiopathic hypersomnia and ≥2 patients for narcolepsy. Results There were 305 respondents, including 62 primary care physicians (PCPs), 67 neurologists, 82 psychiatrists, 90 pulmonologists, and 4 sleep specialists. Most were male (73%), White (58%), and 35–54 years of age (62%); 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 (PCPs, 29%; neurologists, 60%; psychiatrists, 34%; pulmonologists, 62%), and 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 (strongly/somewhat agree), a lower proportion compared with other sleep disorders (93% for obstructive sleep apnea, 76% for restless legs syndrome, 72% for narcolepsy type 1, and 67% for narcolepsy type 2). Most considered the diagnostic process to be challenging (strongly agree, 40%; somewhat agree, 47%; neither agree nor disagree, 9%; somewhat disagree, 4%; strongly disagree, 1%) and agreed that patients with idiopathic hypersomnia are often misdiagnosed (strongly/somewhat agree, 90%) and that 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 to be both a daytime wakefulness disorder and a nighttime sleep disorder (64%). Conclusion The survey findings highlight the need for more healthcare provider education and increased understanding of idiopathic hypersomnia, its diagnosis, and its impact on patients’ lives. Support (If Any) Jazz Pharmaceuticals, with participation of the Hypersomnia Foundation.