Does self-reported well-being of patients with Parkinson’s disease influence caregiver strain and quality of life? q Michele Peters a , Ray Fitzpatrick a , Helen Doll a , Diane Playford b , Crispin Jenkinson a, * a Department of Public Health, University of Oxford, Old Road Campus, Oxford OX3 7LF, UK b National Hospital for Neurology and Neurosurgery, Queen Square, London W1N 3BG, UK article info Article history: Received 8 October 2010 Received in revised form 1 December 2010 Accepted 7 February 2011 Keywords: Parkinson’s Disease questionnaire SF-12 Carer strain index Quality of life 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. Ó 2011 Elsevier Ltd. All rights reserved. 1. 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 consid- erable 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 conse- quences 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 q The review of this paper was entirely handled by an Associate Editor, J. Carr. * Corresponding author. Health Services Research Unit, Department of Public Health, Old Road Campus, Headington, Oxford OX3 7LF, UK. Tel.: þ44 1865 289441; fax: þ44 1865 289436. E-mail address: crispin.jenkinson@dphpc.ox.ac.uk (C. Jenkinson). Contents lists available at ScienceDirect Parkinsonism and Related Disorders journal homepage: www.elsevier.com/locate/parkreldis 1353-8020/$ e see front matter Ó 2011 Elsevier Ltd. All rights reserved. doi:10.1016/j.parkreldis.2011.02.009 Parkinsonism and Related Disorders 17 (2011) 348e352