Satisfaction with Care in Late Stage Parkinson's Disease.

Kristina Rosqvist,Peter Hagell,Susanne Iwarsson,Maria H Nilsson,Per Odin

doi:10.1155/2019/2593547

Abstract

In late stage Parkinson's disease (PD) (i.e., Hoehn and Yahr (HY) stages IV-V), both motor and nonmotor symptoms (NMS) are pronounced, and the patients become increasingly dependent on help in their daily life. Consequently, there is an increasing demand on health-care and social care resources for these patients and support for their informal caregivers. The aim of this study was to assess satisfaction with care in late stage PD patients and to identify factors associated with satisfaction with care. Moreover, to assess their informal caregivers' satisfaction with support and to identify factors associated with caregivers' satisfaction with support. Factors potentially associated with satisfaction with care/support were assessed in 107 late stage PD patients and their informal caregivers (n=76) and entered into multivariable logistic regression analyses. Fifty-eight (59%) of the patients and 45 (59%) of the informal caregivers reported satisfaction with their overall care/support. Patients satisfied with their care reported higher independence in activities of daily living (ADL) (Katz ADL index; P=0.044), less depressive symptoms (Geriatric Depression Scale, GDS-30; P=0.005), and higher individual quality of life (QoL) (Schedule for the Evaluation of Individual Quality of Life Questionnaire, SEIQoL-Q; P=0.036). Multivariable logistic regression analyses identified depressive symptoms (P=0.015) and independence in ADL (P=0.025) as independently associated with satisfaction with care. For informal caregivers, the analyses identified patients' HY stage (P=0.005) and caregivers' QoL (Alzheimer's Carers Quality of Life Inventory, ACQLI; P=0.012) as independently associated with satisfaction with caregiver support. The results indicate that an effective both pharmacological and nonpharmacological PD therapy is important, to adequately treat motor and NMS (e.g., depressive symptoms) in order to improve depressive symptoms and patient independence in ADL. This may benefit not only the patients, but also their informal caregivers.

Highlights

In the late and most severe stage of Parkinson’s disease (PD), i.e., Hoehn and Yahr (HY) stages IV-V [1], both motor and nonmotor symptoms (NMS) are pronounced [2,3,4], and the patients become increasingly dependent on help from others in their daily life [1, 5]
Late stage PD has been estimated to constitute about 15–20% of the PD population [6], which prevalence is expected to increase due to increased longevity and improved health care [5, 7, 8]
As PD is a progressive disease, the burden on informal/family caregivers is likely to increase during the late stage of the disease [9]

Summary

Introduction

In the late and most severe stage of Parkinson’s disease (PD), i.e., Hoehn and Yahr (HY) stages IV-V [1], both motor and nonmotor symptoms (NMS) are pronounced [2,3,4], and the patients become increasingly dependent on help from others in their daily life [1, 5].Late stage PD has been estimated to constitute about 15–20% of the PD population [6], which prevalence is expected to increase due to increased longevity and improved health care [5, 7, 8]. As PD is a progressive disease, the burden on informal/family caregivers is likely to increase during the late stage of the disease [9]. There is an increasing demand on health-care and social care resources for these patients and support for their informal/family caregivers [10]. Previous research has shown that PD causes a great burden for the patients’ family caregivers, which affects their own physical health, relationships, and mood [11]. It is essential to recognize and manage caregiver burden, for the well being of both the patient and the family caregiver, as failure to do so may lead to exhaustion for the caregiver and premature institutionalization for the patient [9]

Results

Discussion

Conclusion