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Tracking changes in Parkinson’s Disease (PD) is crucial for personalizing treatment, improving patient care, and facilitating clinical trials. Patient self-reports are valuable, but translating them into clinically meaningful symptoms and quantitative disease progression measures is still needed. To address this, we used a longitudinal dataset of PD patients’ self-reports on bothersome problems and expert-curated clinical domains, proposing a quantitative index to assess burden evolution over time. We analyzed 664 early PD participants, comparing domain occurrence probability changes over 2 years, categorized as ‘Similarity’, ‘Increased’, or ‘Decreased’. Most outcomes showed ‘Similarity’, indicating stable progression. Motor symptoms like tremor (9.9%) showed ‘Decrease’, likely due to treatment, while non-motor symptoms like fatigue (9.8%) increased, highlighting the need for early intervention. Our findings support using integrated measures as clinical trial and care endpoints.

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Toward Quantifying How The Burden of Problems Reported By Patients Evolves in Parkinson’s Disease: An Exploratory Analysis

  • 会议论文

  • 发表日期：

    2026年

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  • Abhishek Hosamath,
  • Lakshmi Arbatti,
  • Karl Kieburtz,
  • Andrew McGarry,
  • Ottavio Vitolo,
  • Ira Shoulson,
  • David Suendermann-Oeft,
  • Michael Neumann,
  • Vikram Ramanarayanan

摘要

Tracking changes in Parkinson’s Disease (PD) is crucial for personalizing treatment, improving patient care, and facilitating clinical trials. Patient self-reports are valuable, but translating them into clinically meaningful symptoms and quantitative disease progression measures is still needed. To address this, we used a longitudinal dataset of PD patients’ self-reports on bothersome problems and expert-curated clinical domains, proposing a quantitative index to assess burden evolution over time. We analyzed 664 early PD participants, comparing domain occurrence probability changes over 2 years, categorized as ‘Similarity’, ‘Increased’, or ‘Decreased’. Most outcomes showed ‘Similarity’, indicating stable progression. Motor symptoms like tremor (9.9%) showed ‘Decrease’, likely due to treatment, while non-motor symptoms like fatigue (9.8%) increased, highlighting the need for early intervention. Our findings support using integrated measures as clinical trial and care endpoints.