Measuring quality of life in Parkinson's disease: selection of-an-appropriate health-related quality of life instrument

doi:10.1016/j.physio.2010.05.006

Physiotherapy

Volume 97, Issue 1, March 2011, Pages 83-89

https://doi.org/10.1016/j.physio.2010.05.006 Get rights and content

Abstract

There is growing awareness of the need to measure quality of life (QOL) in people with Parkinson's disease during routine physiotherapy assessment. This paper highlights why it is important for clinicians to focus particularly on health-related QOL (HRQOL) when assessing people with this disabling and progressive neurological condition, and provides a guide for selection of the most appropriate instruments for measuring HRQOL. Using measures of health utility, health status and wellbeing, physiotherapists can better understand the social, physical and emotional consequences of Parkinson's disease.

Introduction

This article will demonstrate the importance of measuring health-related quality of life (HRQOL) when assessing people with Parkinson's disease, and provides a clinical decision matrix to assist therapists to select the most appropriate instrument for measuring HRQOL. Movement disorders such as hypokinesia, tremor, dyskinesia and postural instability are common characteristics of Parkinson's disease [1]. Individuals with Parkinson's disease may also experience a variety of non-motor symptoms, including depression, sleep disturbance, sensory symptoms and autonomic dysfunction [2], [3]. As well as contributing to disability, the motor and non-motor consequences of Parkinson's disease can compromise quality of life (QOL) in some individuals [2]. Although physiotherapists are accustomed to measuring movement disorders and disability, it can be argued that they have only recently started to incorporate measures of QOL into routine clinical assessment.

Section snippets

Defining quality of life

QOL can be defined as ‘an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns’ (p.1405) [4]. Although debate persists regarding what constitutes QOL [5], there are some key concepts common to most definitions. Firstly, QOL can only be validly judged by the individual themselves [5]. This is because the way in which an individual evaluates their QOL often differs

Health-related quality of life

When assessing an individual with Parkinson's disease, HRQOL is the dimension of life quality that is of particular interest to physiotherapists. This narrows the focus of QOL to the effects of health, and is closely related to the activity and participation domains of the International Classification of Functioning, Disability and Health [15], [16], [17]. For example, a person with Parkinson's disease can have a good HRQOL despite having movement impairments such as tremor or dyskinesia if

Measuring health-related quality of life

Instruments available for measuring HRQOL in people with Parkinson's disease can be classified into three categories: (i) health status, (ii) health utility and (iii) wellbeing (Fig. 2).

Clinical implications

Fig. 3 depicts a decision matrix that may assist clinicians and researchers to select the most appropriate tool for assessing HRQOL in people with Parkinson's disease. The first step is to decide whether to measure HRQOL or another dimension of QOL. If the choice is to measure HRQOL, the next step is to choose a Parkinson's disease-specific or generic instrument. The Parkinson's disease-specific instruments are shown on the left side of the matrix and the generic tools are shown on the right.

Summary

QOL in people with Parkinson's disease can be influenced by their health, socio-economic status, personal beliefs, environmental issues and social relationships. Physiotherapists can assess the HRQOL of people with Parkinson's disease using measures of health utility, health status or wellbeing. Incorporating measures of HRQOL together with clinical measures of Parkinson's disease can guide the assessment and clinical decision-making processes with the aim of optimising the effectiveness of

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Cited by (29)

Dancing for Parkinson Disease: A Randomized Trial of Irish Set Dancing Compared With Usual Care
2017, Archives of Physical Medicine and Rehabilitation
Citation Excerpt :
Motor impairment, functional endurance, balance, and QOL were assessed using the following psychometrically appropriate measures: the motor section of the Unified Parkinson's Disease Rating Scale, 6-minute walk test, mini-BESTest, and Parkinson's Disease Questionnaire-39 (PDQ-39), respectively.23-28 The PDQ-39 specifically measures health status, a dimension of QOL.29 A subsample of participants in the dance group completed an exit questionnaire30 at the end of the study.
To examine the feasibility of a randomized controlled study design and to explore the benefits of a set dancing intervention compared with usual care.
Randomized controlled design, with participants randomized to Irish set dance classes or a usual care group.
Community based.
Individuals with idiopathic Parkinson disease (PD) (N=90).
The dance group attended a 1.5-hour dancing class each week for 10 weeks and undertook a home dance program for 20 minutes, 3 times per week. The usual care group continued with their usual care and daily activities.
The primary outcome was feasibility, determined by recruitment rates, success of randomization and allocation procedures, attrition, adherence, safety, willingness of participants to be randomized, resource availability, and cost. Secondary outcomes were motor function (motor section of the Unified Parkinson's Disease Rating Scale), quality of life (Parkinson's Disease Questionnaire-39), functional endurance (6-min walk test), and balance (mini-BESTest).
Ninety participants were randomized (45 per group). There were no adverse effects or resource constraints. Although adherence to the dancing program was 93.5%, there was >40% attrition in each group. Postintervention, the dance group had greater nonsignificant gains in quality of life than the usual care group. There was a meaningful deterioration in endurance in the usual care group. There were no meaningful changes in other outcomes. The exit questionnaire showed participants enjoyed the classes and would like to continue participation.
For people with mild to moderately severe PD, set dancing is feasible and enjoyable and may improve quality of life.
Quality of life in patients with PD and their caregiving spouses: A view from both sides
2015, Clinical Neurology and Neurosurgery
Citation Excerpt :
The Sickness Impact Profile (SIP) and the 36 item Short-Form Health Survey (SF-36) are well known examples of scales that were frequently used to study PD [3,31–34]. The EuroQoL scale (EQ-5D) is especially interesting as it is relatively short, it includes an evaluation with a linear visual analogue scale (VAS) and, similar to the SIP and SF-36, normative values were reported as a means of comparison to a healthy control population [3,7,23,35–39]. The VAS has frequently been used in other studies considering the quality of life in Parkinson's disease [3,7,23,35–39].
In contrast to the wealth of studies on quality of life (QoL) in patients with Parkinson's disease, the number of reports on QoL in caregivers, especially partners as primary caregivers, is fairly limited. In this report we wanted to investigate if patients and caregiving partners are able to reliably estimate each other's present and former QoL.
We used a visual analogue scale in order to obtain the patients’ and their partners’ scores of present and former QoL. Moreover we studied correlations of these mutual estimates with demographic variables and measures of patient dependency.
As expected both patients and partners considered their QoL as decreased when compared to former QoL. Interestingly both patients and partners were able to reliably estimate each other's QoL. Patients judged their own former QoL and that of their partner as lower as did their partners. All QoL measures were significantly correlated to measures of mental state and patient dependency. There was a negative correlation with increasing age but not with disease duration.
These results indicate the validity of using proxy information by a caregiving partner in estimations of QoL.
Using partial decision trees to predict Parkinson's symptoms: A new approach for diagnosis and therapy in patients suffering from Parkinson's disease
2012, Computers in Biology and Medicine
In this work we present a method based on partial decision trees and association rules for the prediction of Parkinson's disease (PD) symptoms. The proposed method is part of the PERFORM system. PERFORM is used for the treatment of PD patients and even advocate specific combinations of medications. The approach presented in this paper is included in the data miner module of PERFORM. A patient performs some initial examinations and the module predicts the future occurrence of the symptoms based on the initial examinations and medications taken. Using the method, the expert can prescribe specific medications that will not cause, or postpone the appearance of specific symptoms to the patient. The approach employed is able to provide interpretation for the predictions made, by providing rules. The models have been developed and evaluated using real patient's data and the respective results are reported. Another functionality of the data miner module is the extraction of rules through a user friendly interface using association rule mining algorithms. These rules can be used for the prediction analysis of patient's reaction to certain treatment plans. The accuracy of the symptoms' prediction ranges from 57.1 to 77.4%, depending on the symptom.
Determinants of health-related quality of life in Parkinson's disease: A systematic review
2011, Parkinsonism and Related Disorders
Citation Excerpt :
In studies that reported the mean duration of PD and the mean age of diagnosis, the mean disease duration was 6.80 years (range 2.98–12.1) and the mean age of onset was 58.96 years (range 52.6–66.7). The instruments that can be used to measure HRQOL in PD can be classified into three categories: health status, health utility and wellbeing [34]. The majority of studies utilised either a generic or disease-specific measure of health status to quantify HRQOL (Table 2).
This systematic review critically evaluates the literature to identify the demographic and clinical factors that predict the health-related quality of life (HRQOL) of people with Parkinson’s disease (PD). Understanding how these factors relate to HRQOL in people with PD may assist clinicians minimise the functional and social impact of the disease by optimising their assessment and clinical decision making processes. A tailored search strategy in six databases identified 29 full-text reports that fulfilled the pre-defined inclusion and exclusion criteria. The quality of included studies was assessed by two independent reviewers using a customised assessment form. A best-evidence synthesis was used to summarise the demographic and clinical factors that were examined in relation to HRQOL. Depression was the most frequently identified determinant of HRQOL in people with idiopathic PD. Disease severity and disease disability were also found to be predictive of poor HRQOL outcomes in many studies. The motor symptoms that contributed most often to overall life quality were gait impairments and complications arising from medication therapy. To minimise the impact of PD on HRQOL, it may be necessary to consider the extent to which demographic factors and motor and non-motor symptoms contribute to life quality.
Determinants of Dual-task Gait Speed in Older Adults with and without Parkinson's Disease
2023, International Journal of Sports Medicine
Efficacy of dance for Parkinson’s disease: a pooled analysis of 372 patients
2022, Journal of Neurology

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DiscussionMeasuring quality of life in Parkinson's disease: selection of-an-appropriate health-related quality of life instrument

Abstract

Introduction

Section snippets

Defining quality of life

Health-related quality of life

Measuring health-related quality of life

Clinical implications

Summary

Health Policy

J Clin Epidemiol

Parkinson Relat Disord

Striding out with Parkinson disease: evidence-based physical therapy for gait disorders

Phys Ther

How does Parkinson's disease affect quality of life? A comparison with quality of life in the general population

Move Disord

A review of the health-related quality of life and economic impact of Parkinson's disease

Drugs Aging

Measuring the value of health-related quality of life

Quality of life in chronic diseases—perceptions of elderly patients

J Gerontol

Neuropsychiatric problems in Parkinson's disease: comparisons between self and caregiver report

Aging Ment Health