What Parkinson's disease patients say in their own words about their mood and anxiety symptoms

Karen E Anderson; Connie Marras; Amy Amara; Lana M Chahine; Shirley Eberly; Abhishek Hosamath; Daniel Kinel; Sneha Mantri; Soania Mathur; David Oakes; Jennifer L Purks; David G Standaert; Daniel Weintraub; Ira Shoulson; Lakshmi Arbatti

doi:10.1016/j.parkreldis.2024.107190

What Parkinson's disease patients say in their own words about their mood and anxiety symptoms

Parkinsonism Relat Disord. 2024 Nov 8:130:107190. doi: 10.1016/j.parkreldis.2024.107190. Online ahead of print.

Authors

Affiliations

¹ Georgetown University, Washington, DC, USA. Electronic address: kea45@georgetown.edu.
² Edmond J. Safra Program in Parkinson's Disease, University Health Network, University of Toronto, Canada.
³ University of Colorado, Aurora, CO, USA.
⁴ University of Pittsburgh, Pittsburgh, PA, USA.
⁵ University of Rochester, Rochester, NY, USA.
⁶ Grey Matter Technologies/Modality.ai, San Francisco, CA, USA.
⁷ Center for Health + Technology, University of Rochester Medical Center, Rochester, NY, USA.
⁸ Duke University, Durham, NC, USA.
⁹ PD Avengers, Toronto, Ontario, Canada.
¹⁰ University of Alabama at Birmingham, Birmingham, AL, USA.
¹¹ Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA.
¹² University of Rochester, Rochester, NY, USA; Grey Matter Technologies/Modality.ai, San Francisco, CA, USA.

PMID: 39579746
DOI: 10.1016/j.parkreldis.2024.107190

Abstract

Objective: To understand what Parkinson's Disease (PD) patients report in their own words about their mood and anxiety problems using the Parkinson's Disease Patient Report of Problems (PD-PROP).

Methods: Patient-reported data from the PD-PROP (reporting most bothersome problems due to PD in their own words), Geriatric Depression Scale, MDS-UPDRS II, and the Euro-Q0L from the Fox Insight research database (https://foxinsight.michaeljfox.org/) were examined using cross-sectional comparisons and logistic regression analyses to characterize non-depressive mood symptoms and anxiety.

Results: We identified 21,487 participants who completed at least one PD-PROP questionnaire. Four categories of non-depressive mood symptoms (Anxiety/Worry, Loneliness/Isolation, Negative Emotions NOS (Not Otherwise Specified), Death/Suicidal Ideation) were identified. Women were much more likely than men to report non-depressive mood symptoms as a bothersome PD-related problem. The frequency of Anxiety/Worry reporting decreased with longer duration of PD while Loneliness/Isolation increased. More severe PD motor impairment, as measured by the MDS-UPDRS II, was associated with increased reporting of Negative Emotions and Loneliness/Isolation. Higher Euro-QoL, indicating better quality of life, was associated with decreased reporting of Loneliness/Isolation. Death/Suicidal Ideation was only reported by a small number of participants (<0.5 %).

Conclusions: Women were more likely than men with PD to identify Anxiety/Worry, Negative Emotions, and Loneliness/Isolation as problems. This finding and the higher prevalence of bothersome loneliness/isolation as PD duration increases can guide monitoring for these issues.

Keywords: Anxiety; Depression; Isolation; Loneliness; Machine learning; NLP; Negative emotions; Parkinson's disease; Patient-reported outcomes; Suicidal ideation; Worry.