Longitudinal patterns of loss of independence in Parkinson disease.

Aim: To examine the longitudinal loss of independence (LOI) in Parkinson disease (PD) and introduce event visualization as a research tool. Methods: Early-stage PD patients seen by a movement disorders specialist from 2003–2020 were included. LOI, defined as needing help with activities of daily liv...

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Published in:Neurodegenerative Disease Management Vol. 16; no. 1; pp. 1 - 12
Main Authors: Lee, Tsung-Ying, Shulman, Lisa M., Gruber-Baldini, Ann L., Slejko, Julia F., Gopalakrishnan, Mathangi, Onukwugha, Eberechukwu
Format: research tables/charts Journal Article
Published: Taylor & Francis Ltd Feb2026
Online Access:View this record in EBSCOhost
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      dt: Feb2026
      vid: 16
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      pub: Taylor & Francis Ltd
      place: Philadelphia, Pennsylvania
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        10.1080/17582024.2025.2514982
        190930928
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        atl: Longitudinal patterns of loss of independence in Parkinson disease.
      aug:
        au:
          Lee, Tsung-Ying
          Shulman, Lisa M.
          Gruber-Baldini, Ann L.
          Slejko, Julia F.
          Gopalakrishnan, Mathangi
          Onukwugha, Eberechukwu
        affil: Department of Practice, Sciences, and Health Outcomes Research, University of Maryland School of Pharmacy, Baltimore, MD, USA
      sug:
        subj:
          Parkinson Disease Psychosocial Factors
          Parkinson Disease Physiopathology
          Activities of Daily Living
          Disease Progression
          Guided Imagery
          Human
          Maryland
          Male
          Female
          Adult
          Middle Age
          Aged
          Prospective Studies
          Scales
          Questionnaires
          Descriptive Statistics
          Patient-Reported Outcomes
          Functional Status
          Support, Social
          Counseling
          Disability Evaluation
          Adult: 19-44 years
          Middle Aged: 45-64 years
          Aged: 65+ years
          Male
          Female
      ab: Aim: To examine the longitudinal loss of independence (LOI) in Parkinson disease (PD) and introduce event visualization as a research tool. Methods: Early-stage PD patients seen by a movement disorders specialist from 2003–2020 were included. LOI, defined as needing help with activities of daily living (ADLs), was assessed using the modified Older Americans Resources and Services Daily Function Questionnaire. EventFlow software visualized LOI patterns. Results: The cohort included 296 patients (mean age 60.8; 61% male; 94% Hoehn & Yahr stages 1–2). At baseline, 91% were independent. LOI occurred in 133 patients for ≥ 1 ADL, and in 95 patients for ≥ 3 ADLs. Housework was the most frequent first ADL needing help (58 of 133), with a mean onset of 4.6 years. Among those with LOI, 57 (43%) regained independence at least once. Conclusion: LOI in PD shows both transient and persistent patterns. Event visualization may aid understanding of progression and support patient counseling. Plain Language Summary: People with Parkinson disease (PD) often worry about losing their ability to do everyday tasks on their own. In this study, we followed nearly 300 individuals with early-stage PD over several years to understand how their independence changed over time. We looked at when they first began needing help with daily activities, such as preparing meals, shopping, or housework. During the study, we found that almost half of the patients reported needing help with at least one task – most often housework. However, many of them later regained their independence, sometimes more than once. Our findings suggest that some people improve after their independence loss, possibly with treatments or supports. This information may help people living with PD – and their families – better understand what to expect and how to prepare for the future.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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