Does self-reported well-being of patients with Parkinson's disease influence caregiver strain and quality of life?

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Abstract

Background

The impact of Parkinson's disease (PD) on the quality of life of both patients and their carers has not been well documented.

Objective

This study describes the health status of both PD patients and caregivers as measured on a generic measure of health status (SF-12), and then explores to what extent patient self-reported health, as measured on the disease-specific Parkinson's Disease Questionnaire (PDQ-39), is associated with carer strain and self-reported quality of life.

Methods

A postal survey was carried out of both patients and caregivers through local branches of Parkinson's UK. Questionnaire packs were sent to those on the database with a diagnosis of PD. The patient was asked to give the carer questionnaire to their main caregiver, if they had one.

Results

Results from the SF-12 suggests that PD has substantial adverse effects on both the physical and mental well-being of patients when compared with population norms. While carer physical health was not found to be substantially different from that of the general population, emotional health was lower than that of the general population. Furthermore, results suggest that the self-reported health status of PD patients is associated with higher levels of caregiver strain and poorer emotional health.

Conclusion

PD impacts on both the well being of both patients and caregivers; the data provide evidence that the health status of the patient, in particular their physical health, has a significant impact on the well-being of their caregiver.

Introduction

The impact of Parkinson's Disease (PD) on the individual with PD is wide-ranging, with postural and gait problems reducing mobility or rigidity in the face affecting social interaction. There may also be cognitive effects including dementia in the later stages. Not surprisingly, PD may widely impact on health-related quality of life in terms of role function and emotional and social well-being [1], [2].

Due to the problems associated with PD, individuals affected by the disease often need a caregiver. Usually it is a family member who becomes the caregiver. The role of the caregiver becomes progressively important as the disease progresses. Therefore it is not only the impact of PD on patients that is of importance, but also the impact on caregivers. The impact on caregivers has been assessed in terms of quality of life, burden, strain or distress. Quality of life is lower in PD caregivers than in the general population [3], [4] and they are more likely to report mood disorders [4]. Caregivers, in particular spouse caregivers, have more severe depression and higher reports of tiredness, sadness and lower life satisfaction than healthy elderly controls [5], and they report experiencing considerable burden in terms of health, depression and social life [6], psychological distress [7] and strain from their caregiving role [8]. Younger spouse caregivers are at greater risk for negative consequences from their caring role, even in the early stages of disease, than older spouse caregivers [8].

Previous studies have assessed associations between patient and caregiver variables, particularly with the aim of identifying which patient variables are associated with differences in caregiver well-being. Significant correlations have been found between caregiver quality of life and increasing disease severity [3], [4], disease duration [4], patient disability [3] and patient depression [4]. Caregiver burden correlates significantly with increasing patient disability and symptoms of PD (in particular mental health problems and falls), patients' depression and disease-specific quality of life scores [6].

The measurement of functioning and well-being from the perspective of the patient has, over the last few decades, become central to the assessment of health and the evaluation of treatment regimes. There has been an enormous growth in the application of measures designed to assess quality of life in a vast array of medical specialities. A number of measures have been used in PD [9], [10]. However, to date, there has been limited research evaluating patient quality of life and its association with carer strain and well-being. Some small scale studies have explored this issue, mostly in clinical samples, and have suggested that predictors of carer quality of life, based on regression analysis, were patient gender, disease duration, patient quality of life and patient activities of daily living (ADL) [11] and possible predictors of caregivers' burden were patients' mood and quality of life [3]. One relatively small scale clinic survey suggested that patient reported quality of life, as measured on the Parkinson's Impact Scale, was associated with carer reported well being as measured on the same instrument [12]. The purpose of this paper is, therefore, to explore the relationship of patient quality of life with caregiver burden and well-being in a large scale community survey:

  • firstly, it documents the health status of both PD patients and caregivers as measured on a generic measure of health status, the SF-12 Health Survey. Data gained from both patients and caregivers is compared with normative data.

  • secondly, the paper explores to what extent patient self-reported health, as measured on the disease-specific Parkinson's Disease Questionnaire (PDQ-39), is associated with carer strain (Carer Strain Index) and self-reported quality of life.

Section snippets

Methodology

A postal survey was carried out with patients and caregivers from October 2008 to January 2009. PD patients were recruited through local branches of Parkinson's UK (formerly the Parkinson's Disease Society). Twenty-seven local branches participated with an average of 73 members (range 20–150). For reasons of data protection, the branches were not able to make address lists available to the research team and local branches thus mailed out pre-packed questionnaires to their members. Members of

Results

A total of 901 (567 men and 320 women) patients and 704 (213 men and 539 women) caregivers were included in the study. In 197 (20.7%) cases, only the patient questionnaire was returned, in 51 (5.4%) cases it was only the caregiver questionnaire and in 704 (73.9%) cases both patient and caregiver questionnaires were returned. The mean age of patients in the study was 74 years (range 28–97 years), whilst the mean age of carers was 67 years (range 20–89 years). The majority of caregivers (n = 672)

Discussion

This paper assesses the potential impact of patient quality of life upon caregivers strain and well-being in Parkinson's disease. Previous research [3], [6], [11] in this area has been relatively small scale and predominantly based on clinic samples. Furthermore, previous research has mainly only focussed on associations between clinical patient variables and caregiver quality of life. Two small scale studies have found significant associations between caregiver burden and patient

Acknowledgements

The research reported here was funded by the Department of Health. We also wish to acknowledge the role of Parkinson's UK for help with recruitment at all stages of the project.

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    The review of this paper was entirely handled by an Associate Editor, J. Carr.

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