Abstract Details

Title Narcolepsy & Idiopathic Hypersomnia Patient Journey, Clinical Features and Treatments in a Real-World US Population

Topic Sleep

Presentation(s) S6 - Sleep (4:42 PM-4:54 PM)

Poster/Presentation
Number 007

Background People with NT1, NT2, and IH endure long diagnostic delays (up to 15 years), have many comorbidities, and suffer considerable, poorly recognized disease burden.

Objective To characterize patients with narcolepsy type 1 (NT1), narcolepsy type 2 (NT2), and idiopathic hypersomnia (IH), their diagnosis, and treatment journey using administrative health data.

Design/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 hierarchically into NT1; NT2; IH; NT2/IH cohorts. Patient journeys, 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 45 years, 64% female) were included: 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% (narcolepsy) and 13–14% (IH) of patients.

9,608 (18.6%) 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 switches (n=8,262), no sleep tests were recorded for 68% between switches and 38% at any 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.

Conclusions 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.

Authors/Disclosures
Dana Y. Teltsch, PhD PRESENTER	Dr. Teltsch has received personal compensation for serving as an employee of Takeda. Dr. Teltsch has stock in Takeda.
Bonnie K. Bui, PhD	Dr. Bui has received personal compensation for serving as an employee of Optum. Dr. Bui has stock in UNH.
Amy Anderson	Ms. Anderson has received personal compensation for serving as an employee of AstraZeneca. Ms. Anderson has received personal compensation for serving as an employee of Optum. Ms. Anderson has stock in UnitedHealth Group.
Stephen Crawford, PhD	Dr. Crawford has received personal compensation for serving as an employee of Takeda. Dr. Crawford has stock in Takeda.
Amy Duhig, PhD	Dr. Duhig has received personal compensation for serving as an employee of Takeda . Dr. Duhig has stock in Takeda.
Brandon Diessner, PhD	Dr. Diessner has received personal compensation for serving as an employee of Optum. Dr. Diessner has stock in UnitedHealth Group.
Phani Veeranki, MD, DrPH	Dr. Veeranki has received personal compensation for serving as an employee of Optum . Dr. Veeranki has stock in Optum.
Yelena G. Pyatkevich	No disclosure on file

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