Abstract

Introduction: Given the complex multitude of Parkinson's disease (PD) symptoms, caregiving for PD patients can be highly demanding. Our study was aimed to investigate the characteristics of PD patients related to different levels of caregiver burden.Methods: This cross-sectional study recruited 104 idiopathic PD patient-caregiver pairs. Patients were evaluated on motor, non-motor symptoms, and quality of life (QoL). Caregiver burden was quantified using Zarit Burden Inventory and subsequently stratified into 3 subgroups. Statistical analysis was performed to identify differences in the no-or little, mild-moderate, and high caregiver burden subgroups.Results: The mean disease duration was significantly longer in the high caregiver burden group compared to no-or little group (9.63 vs. 5.17 years; p-value 0.003). The mean levodopa equivalent daily dose (LEDD) and mean total UPDRS Part IV scores (UPDRS4) were significantly higher in the high caregiver burden group compared to no-or little group (p-value 0.011 and 0.004, respectively). The high caregiver burden group had significantly higher median QoL scores (PDQ-39) for PD patients for domain 2 (ADL, p-value 0.005), domain 4 (stigma, p-value 0.005), and domain 6 (cognition, p-value 0.002) compared to no-or little group.Conclusion: Greater caregiver burden was observed in PD patients with more prolonged disease duration, higher LEDD to control motor symptoms as well as greater levodopa related motor complications. Further studies on potential interventions to mitigate or delay levodopa related motor complications may reduce caregiver burden. Marked worsening in patient's QoL, specifically ADL, stigma and cognition in the high compared to no-or little caregiver burden group suggests the possible utility of monitoring these factors for early identification of increasing caregiver stress and burden.

Highlights

  • Given the complex multitude of Parkinson’s disease (PD) symptoms, caregiving for PD patients can be highly demanding

  • Post-hoc test showed that the mean disease duration was significantly longer in the high caregiver burden group compared to no-or little group (p-value 0.003)

  • The mean levodopa equivalent daily dose (LEDD) was significantly higher in the high caregiver burden group compared to no-or little group (556mg vs. 300mg, p-value 0.011)

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Summary

Introduction

Given the complex multitude of Parkinson’s disease (PD) symptoms, caregiving for PD patients can be highly demanding. In particular gait impairment and long-term motor complications arising from levodopa therapy, have been shown to significantly affect the health-related quality of life (QoL) [1]. The non-motor symptoms (NMS) in PD patients have significantly contributed to a lower health-related QoL [2]. These NMS include cognitive impairment, sleep disturbances and mood-related issues. Individuals with more advanced stages of disease and higher levels of disability experienced poorer QoL [2,3,4]. These findings were reproduced in our longitudinal studies as well. We found that the nonmotor problems provided a better prediction for the change in QoL compared to motor symptoms [5]

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