OBJECTIVES: To evaluate patient activation, social support, and health outcomes among people diagnosed with rare sleep-related disorders, idiopathic hypersomnia (PwIH) and narcolepsy (PwN), compared to the more prevalent sleep apnea (PwSA).

METHODS: Retrospective, cross-sectional data from the 2022 and 2020 National Health and Wellness Survey conducted in France, Germany, UK, Italy, and Spain were utilized to identify PwIH (n=76), PwN (n=171), and PwSA (n=4289). Measures included: daytime sleepiness (Epworth Sleepiness Scale [ESS]); Patient Activation Measure (PAM); social support (Modified Medical Outcomes Study Social Support Survey [mMOS-SS]); depression (Patient Health Questionnaire-9); anxiety (Generalized Anxiety Disorder Assessment-7); health-related quality of life (HRQoL; RAND-36 mental [MHC] and physical health composites [PCS], EQ-5D index, EQ visual analog scale [VAS]). Bivariate analyses compared measures by sleep condition.

RESULTS: PwIH and PwN had lower mean age than PwSA (39.8 and 44.2 vs. 58.5 years, respectively); a higher proportion of PwIH were female (64.5%) compared to PwN (43.9%) and PwSA (24.8%). PwIH and PwN reported greater daytime sleepiness (12.1 and 12.8 vs. 8.5), depression (12.9 and 11.9 vs. 7.6), and anxiety (10.0 and 8.7 vs. 5.6) than PwSA. Patient activation was lowest among PwIH and highest among PwSA (mean PAM score, 54.1, 57.4, and 59.2); a higher proportion of PwIH were at Level 1 “disengaged & overwhelmed” (25.0%) compared to PwN (15.8%) and PwSA (n=8.9%). PwIH and PwN had lower social support (50.7 and 51.2 vs. 60.3, p=.001) and lower HRQoL than PwSA (MHC: 28.7 and 32.8 vs. 37.5; PHC: 33.0 and 34.5 vs. 37.2; EQ-5D index: 0.57 and 0.55 vs. 0.67; EQ VAS: 49.5 and 53.2 vs. 58.2). All p<.001 unless otherwise noted.

CONCLUSIONS: Those with rare sleep conditions (PwIH, PwN) had greater burden and unmet need compared to PwSA; PwIH reported lower patient activation than PwSA. Future research is needed to understand the factors that impact these relationships.