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Abstract Introduction Narcolepsy and idiopathic hypersomnia (IH) are central disorders of hypersomnolence. People with narcolepsy type 1 (NT1), narcolepsy type 2 (NT2), and IH endure long diagnostic delays (up to 15 years), have many comorbidities, and suffer considerable, poorly recognized disease burden. Administrative health data present an opportunity to characterize these patients, their diagnosis, and treatment journey in real-world clinical practice. Methods This retrospective cohort study included patients aged ≥2 years with (non-diagnostic) medical claims for narcolepsy or IH between January 01, 2014 and December 31, 2021 in Optum’s Market Clarity integrated claims and EHR database. Patients with ≥24 months continuous enrollment prior to last narcolepsy/IH diagnosis (index date) were classified into NT1; NT2; IH; NT2/IH cohorts. Patient journeys, including diagnostic evaluations and treatments, were described using all enrolled time, while comorbidities were described during a 12-month baseline period. Results Overall, 51,548 patients (median age: 45 years IQR 32–58; female: 64%) were included with a median pre-index observation period of 52 months: 7,742 (15%) NT1; 31,132 (60%) NT2; 12,287 (24%) IH; and 387 (1%) NT2/IH. Cardiovascular disease (52%), depression (39%), anxiety disorders (38%), obesity (32%) and sleep apnea (40%) were similarly common across cohorts during the 12 months pre-index. Substance-abuse disorders were reported among 18%–19% of narcolepsy and 13%–14% of IH cohorts. Most patients (81%) had a consistent diagnosis (NT1;NT2;IH) throughout the study period, but 9,608 patients had diagnosis switches, most commonly NT2-NT1 (n=3,355), NT1-NT2 (n=2,656), NT2-IH (n=1,187), IH-NT2 (n=859) or NT1-IH (n=205). Among patients with these most common switches (n=8,262), 68% had no record of sleep tests between the switches and 38% had no sleep test recorded during all observed time. Common treatments included SSRI/SNRI (57%), stimulants (41%), and wake-promoting agents (39%); 15% of NT1 patients received oxybate and 2.6% pitolisant. Among patients without a diagnosis switch (n=41,940), 26% did not receive any NT/IH medication after diagnosis. Conclusion In a large real-world US population, sleep diagnostic evaluations were underutilized and many patients were untreated. A small proportion received narcolepsy-specific medications. These results indicate an unmet need for effective diagnostic and treatment strategies for patients with narcolepsy/IH. Support (if any) Funded by Takeda
Teltsch et al. (Sat,) studied this question.