Presentation (CTI)

OBJECTIVES: While excessive daytime sleepiness (EDS) is a cardinal symptom of narcolepsy, the severity of EDS symptoms may not represent a holistic assessment of patients’ perceptions of the severity of their condition. Thus, EDS severity alone may not reliably indicate the burden of narcolepsy. We sought to understand whether self-reported severity of narcolepsy or the validated measure of EDS was a better predictor of health-related outcomes among individuals with narcolepsy in the United States (US).
METHODS: Cross-sectional data from the 2023 US National Health and Wellness Survey (NHWS) was used to identify individuals with narcolepsy (self-reported physician diagnosis and experienced in past 12 months). Measures included: self-reported severity, EDS (Epworth Sleepiness Scale [ESS]); depression (Patient Health Questionnaire-9); anxiety (Generalized Anxiety Disorder Assessment-7); health-related quality of life (HRQoL; RAND-36 general, mental and physical health composites, EQ-5D index, EQ visual analog scale [VAS]); work productivity impairment; healthcare resource use (past 6 months). Generalized linear models were used to examine association of self-reported severity and ESS scores with health-related outcomes.
RESULTS: Analyses included 209 respondents with narcolepsy (54% female; mean age = 43.7 years, 56% White, 22% Black/African American; 15% Hispanic). Self-reported severity was as follows: 46% mild, 36% moderate, 18% severe. Mean ESS score was 13.8 (SD=6.1); 43% were classified as having severe EDS. Self-reported severity alone was significantly associated with greater depression and anxiety, worse HRQoL (RAND-36 general health composite and mental health composite, EQ-5D index, and EQ VAS scores), and greater work productivity impairment. Conversely, ESS scores alone were significantly associated with more outpatient visits and hospitalizations in the past 6 months.
CONCLUSIONS: This study demonstrates that symptom severity and overall self-reported severity of condition predict different health outcomes and highlights the value of incorporating both types of measures to capture a more holistic understanding of patients’ burden.