Aims: To quantify the impact of sleep disturbance (Sd) and early morning OFF (EMO) symptoms on health-related quality of life (HRQoL) in people with advanced Parkinson’s Disease (PwP).
Methods: Adults (>30 years) with self-reported PD diagnosis for ≥5 years, with ≥2 hours/day of OFF time, on oral PD medications, residing in US or UK, completed an online questionnaire to measure the impact of Sd and EMO on PwP’s HRQoL. Participants rated four health states: A) No Sd or EMO, B) Sd without EMO, C) EMO without Sd, and D) both Sd+EMO, using EQ-5D-5L (utility scored from -0.573 to 1) and EQ-VAS (0 to 100 scale).
Results: Among 75 participants (average age 64.3 years, 9.8 years PD duration, 3.9 OFF hours/day), 96% experienced Sd and 99% experienced EMO at least once in the past week; 38% and 32%, respectively, experiencing them ≥4 times. Over the past year, 49% and 24% had not discussed Sd or EMO with a neurologist or movement disorder specialist. Sd (utility 0.80) or EMO (0.70) was associated with low EQ-5D-5L health-state utility values, with the lowest utility observed when both were present (0.53) compared with no symptoms (0.91). Mean EQ-VAS scores ranged from a mean of 81.01 (no symptoms) to 48.41 (both symptoms) with intermediate scores for Sd (65.85) and EMO (60.07).
Conclusions: Sd and EMO substantially impact PwP’s HRQoL, with EMO having a more detrimental effect. Many PwP do not discuss these symptoms with their HCPs, revealing a need for greater communication and proactive management