Burden and disutility of sleep disturbance and early morning OFF symptoms in people with advancing Parkinson's disease: a vignette-based approach using the EQ-5D-5L.
Burden and disutility of sleep disturbance and early morning OFF symptoms in people with advancing Parkinson's disease: a vignette-based approach using the EQ-5D-5L.
Where did the research take place?
The study site has not been established. Author addresses may differ from where the research occurred.
Orpington, GB · Author affiliation
Parkinson's Europe, Orpington, UK. domingosjosefa@gmail.com.Location evidence
Almada, PT · Author affiliation
Egas Moniz School of Health & Science, Almada, Portugal. domingosjosefa@gmail.com.Location evidence
Rotterdam, NL · Author affiliation
Patient Centered Outcomes, OPEN Health, Rotterdam, The Netherlands.Location evidence
US · Author affiliation · country only
Department of Neurology, Fixel Institute for Neurological Diseases, University of Florida, Gainesville, FL, USA.Location evidence
London, GB · Author affiliation
Dementech Neuroscience Clinical Academic Centre, London, UK.Location evidence
Belfast, GB · Author affiliation
Health Economics, Queen's University Belfast, Belfast, UK.Location evidence
Chicago, US · Author affiliation
Northwestern University Feinberg School of Medicine, Chicago, IL, USA.Location evidence
South San Francisco, US · Author affiliation
AbbVie Inc, South San Francisco, CA, USA.Location evidence
North Chicago, US · Author affiliation
AbbVie Inc, North Chicago, IL, USA.Location evidence
Munich, DE · Author affiliation
Patvocates, Munich, Germany.Location evidence
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Original abstract
BACKGROUND: Parkinson’s disease (PD) is characterized by motor and non-motor symptoms that fluctuate as oral medication wears off, causing periods when symptoms return (“OFF” time) and periods of control (“ON” time). These fluctuations often occur at night and early morning. Sleep disturbance (SD) and early-morning OFF time (EMO) have been shown to decrease health-related quality of life (HRQoL) in people with PD (PwP). However, limited evidence exists on how these symptoms impact health state utility values (HSUVs) used in economic modeling. This study aimed to estimate the burden and disutility of SD and EMO in PwP through vignettes valued using the EQ-5D-5 L. METHODOLOGY: An online survey was completed by adults (≥ 30 years) with self-reported PD diagnosis for ≥ 5 years and ≥ 2 h/day of OFF time, on oral PD medications, and residing in the US or UK. The survey included EQ-5D-5 L and EQ-VAS assessments for 4 vignettes—No SD or EMO, SD (without EMO), EMO (without SD), and Both SD and EMO—plus questions exploring the burden of SD and EMO. EQ-5D-5 L responses were converted into US utility values to estimate HSUVs and the disutility of SD and EMO. RESULTS: Seventy-five individuals completed the survey; 52.00% were male, and 78.66% resided in the US. The average age was 64.32 years, with a mean time since diagnosis of 9.82 years and an average OFF time of 3.91 h/day. In the previous week, 96.00% and 98.67% of respondents reported experiencing SD and EMO, respectively. The presence of either SD (HSUV: 0.796) or EMO (HSUV: 0.701) alone resulted in lower EQ-5D-5 L utilities, with the presence of both valued least (HSUV: 0.528), compared with when both SD and EMO were absent (HSUV: 0.911). EQ-VAS scores ranged from 81.01 for no symptoms to 48.41 for both. CONCLUSIONS: SD and EMO impose a significant burden on PwP and decrease HSUVs. As SD and EMO were associated with significant disutility, they should be incorporated into economic models to comprehensively assess PD treatment benefits. Raising awareness among PwP and healthcare providers and prioritizing treatments that minimize SD and EMO can reduce their burden and improve HRQoL for PwP.