Objective: To investigate demographic differences and key determinants of quality of life (QOL) in a large, online cohort.
Background: PD is a multisystem, progressive illness with a variable clinical presentation, but few studies have investigated the key determinants of QOL outside of clinical trials. The Fox Insight study is a large, online cohort that provides a unique opportunity to understand the experience of Parkinson’s disease from the patient’s perspective.
Method: As part of an ongoing online cohort study, we performed a cross-sectional analysis at baseline to investigate determinants of health-related QOL. QOL was measured by the EQ-5D-5L, which was then converted into an index score (ranging from worst QOL at -0.6 and best at 1) based on validated norms for the US population. We conducted ANOVA and t-tests to evaluate differences in demographic subpopulations. We then performed a stepwise multiple linear regression of QOL over movement symptoms (MDS-UPDRS part Ib/II), non-movement symptoms (NMS Quest-PD), depression (Geriatric Depression Scale), and subjective cognitive function (PDAQ-15). Our model controlled for age, sex, and number of medical comorbidities.
Results: In the cohort (n=20,715), health-related QOL was overall high (mean 0.7, SD 0.2). QOL was worse with increased duration of PD (mean 0.72 in early compared to 0.56 in late disease; F 594.9, p<0.0001). Non-white patients reported significantly worse QOL compared to white patients (0.62 compared to 0.67, t=5.8, p<0.0001). In a subset of patients with economic data (n=1,268), QOL did not vary by insurance status (t=1.5, p=0.12) or geographic location (F=2.0, p=0.14). In the linear regression, significant predictors of QOL included motor function (beta=-0.015), non-motor symptoms (beta=-0.003), and depression (beta=-0.015; all p-values<0.001). Our model accounted for 62% of the variance in QOL in this cohort.
Conclusion: Freely available, online surveys are a feasible method of evaluating health-related QOL in PD. QOL was lower in patients with longer duration of disease or non-white race, but did not vary by geographic locations or insurance status. Motor and non-motor symptoms account for a large amount of variation in QOL in patients with PD.
To cite this abstract in AMA style:
M. Bock, E. Brown, C. Tanner. Determinants of quality of life in a large, online cohort of patients with Parkinson’s disease [abstract]. Mov Disord. 2020; 35 (suppl 1). https://www.mdsabstracts.org/abstract/determinants-of-quality-of-life-in-a-large-online-cohort-of-patients-with-parkinsons-disease/. Accessed May 21, 2025.« Back to MDS Virtual Congress 2020
MDS Abstracts - https://www.mdsabstracts.org/abstract/determinants-of-quality-of-life-in-a-large-online-cohort-of-patients-with-parkinsons-disease/