Objective: 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).

Background: Parkinson’s Disease (PD) symptoms at night during sleep and in early morning become progressively more challenging to manage with oral medications as the disease advances. The impact of these symptoms on HRQoL, as measured by health-state utility values, has not been thoroughly quantified.

Method: 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, were invited to complete a questionnaire administered online to measure the impact of Sd and EMO on PwP’s HRQoL. Participants completed the EQ-5D-5L (health state utility scored from -0.573 to 1 according to the US value set) and EQ-VAS (rating health from 0 to 100) for four vignettes representing different health-states: A) No Sd or EMO, B) Sd without EMO, C) EMO without Sd, and D) both Sd+EMO (Figure 1).

Results: Of 75 participants (average age 64.3 years, 9.8 years since PD diagnosis, 3.9 OFF hours/day), 96% experienced Sd and 99% experienced EMO at least once in the past week, with 38% and 32%, respectively, experiencing them ≥4 times (Figure 2). Over the past year, of those 75 participants who saw a healthcare provider (HCP), 37 (49%) and 18 (24%) had not consulted a general neurologist (GN) and/or movement disorder specialist (MDS) regarding their Sd and EMO, respectively, and 12 (16%) and 7 (9%) had not spoken to any HCP (e.g., GN, MDS, general practitioner) regarding their Sd or EMO, respectively. Presence of Sd (0.80) or EMO (0.70) was associated with low EQ-5D-5L health-state utility values, with Sd+EMO resulting in the lowest utility (0.53) compared to no Sd and no EMO (0.91). The EQ-VAS scores ranged from a mean of 81.01 for no symptoms to 48.41 for both symptoms present, with intermediate scores for Sd (65.85) and EMO (60.07).

Conclusion: Sd and EMO substantially impact PwP’s HRQoL, with EMO having a more detrimental effect. Despite their high prevalence and importance, many participants did not discuss them with GNs or MDSs, highlighting a gap in patient care and communication for PD symptom management. Encouraging proactive dialogue between patients and HCPs on night and morning symptoms may improve management strategies and overall QoL.

Figure1

Figure2

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MDS Abstracts - https://www.mdsabstracts.org/abstract/impact-of-sleep-disturbance-and-early-morning-off-symptoms-on-health-related-quality-of-life-in-advanced-parkinsons-disease/