Abstract

Background: Motor progression varies even among those with a single diagnosis such as Parkinson's disease (PD) and little is known about the trajectory of motor signs prior to death. Understanding deterioration patterns may help clinicians counsel patients and proactively plan interdisciplinary care, including palliative care. The objective of this study was to examine and describe Unified Parkinson's Disease Rating Scale motor score (UPDRS-III) trajectories at the end of life in PD.Methods: A retrospective chart review was performed for deceased PD patients who attended the Parkinson and Movement Disorders Program at the University of Alberta for at least 5 years between 1999 and 2018. UPDRS-III scores were recorded for all visits. Trajectory patterns were visualized with Loess curves stratified by sex and age at diagnosis. Piecewise linear models were used to individually model the UPDRS-III scores, and the trajectories obtained were clustered based on their features.Results: Among the 202 charts reviewed, 84 meeting inclusion criteria were analyzed. The UPDRS-III increased over time regardless of sex and age. Distinct trajectory variations present in PD (e.g., Consistent Deterioration, Stability-Deterioration, Improvement-Deterioration, Deterioration-Improvement-Deterioration) were identified. Twenty-five percent of the patients were classified as Undetermined/Irregular trajectories. In addition, regardless of trajectory type, many patients experienced a steep increase in UPDRS-III approaching death. Those with disease diagnosis after age 65 years had a shorter survival time, compared to PD patients with a younger age of onset.Conclusion: Our study identified dominant types of motor trajectory in PD that can help clinicians understand their patients' course of illness. This information can help counsel patients regarding the variability in motor deterioration and should alert physicians to recognize a terminal decline. Age of disease onset was correlated with survival time.

Highlights

  • Multiple factors influence the progression and trajectory of Parkinson’s disease (PD)

  • Exclusion criteria included:

  • The average follow up was 11.4 years among the PD patients, and 64.3% had more than 10 UPDRS-III scores

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Summary

Introduction

Multiple factors influence the progression and trajectory of Parkinson’s disease (PD). Studies on the natural history of PD revealed that despite all advances in the symptomatic management with new pharmacologic agents and technologies for PD, the progression of motor disability is inexorable, adding to patients and caregivers’ burden, especially at the end of life [1,2,3]. PD usually carries a better prognosis than the other atypical parkinsonian syndromes [8] Illnesses such as progressive supranuclear palsy, multiple system atrophy, and corticobasal syndrome have less response to treatment and usually progress more rapidly [11, 12]. The objective of this study was to examine and describe Unified Parkinson’s Disease Rating Scale motor score (UPDRS-III) trajectories at the end of life in PD

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