Informal carers' health-related quality of life and patient experience in primary care: evidence from 195,364 carers in England responding to a national survey.

Martin O. Roland,Catherine L. Saunders,Charlotte A.M. Paddison,Gwilym P.A. Thomas

doi:10.1186/s12875-015-0277-y

Martin O. Roland, Catherine L. Saunders + Show 2 more

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https://doi.org/10.1186/s12875-015-0277-y

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Abstract

BackgroundWe aim to describe the health-related quality of life of informal carers and their experiences of primary care.MethodsResponses from the 2011-12 English General Practice Patient Survey, including 195,364 informal carers, were analysed using mixed effect logistic regressions controlling for age, gender, ethnicity and social deprivation to describe carer health-related quality of life (mobility, self-care, usual activities, pain, and anxiety/depression, measured using EQ-5D) and primary care experience (access, continuity and communication).ResultsInformal carers reported poorer health-related quality of life than non-carers of similar age, gender, ethnicity and social deprivation. Increasing caring commitment was associated with worse EQ-5D scores, with carers of 50+ hours a week scoring 0.05 points lower than non-carers (95 % CI 0.05 to 0.04), equivalent to 18 fewer days of full health annually. Considering each domain of EQ-5D separately, carers of 50+ hours/week were more likely to report pain OR = 1.53 (1.50-1.57), p < 0.0001, and anxiety/depression OR = 1.69 (1.66-1.73), p < 0.0001, than non-carers. Younger carers scored lower on EQ-5D than non-carer peers but the converse was true among over-85s. In the most deprived areas carers reported the equivalent of 37 fewer days of full health annually than carers in the most affluent areas. On average, carers reported poorer patient experiences in all areas of primary care than non-carers (odds ratios 0.84-0.97), with this difference being most marked in the domain of access.ConclusionsInformal carers experience a double disadvantage of poorer health-related quality of life and poorer patient experience in primary care. We find no evidence for health benefits of caregiving. We recommend physicians identify and treat carer health problems, including pain and anxiety/depression, particularly among young, deprived and high time-commitment carers. Improving patient experience for carers, including access to primary care, should be a priority.Electronic supplementary materialThe online version of this article (doi:10.1186/s12875-015-0277-y) contains supplementary material, which is available to authorized users.

Highlights

We aim to describe the health-related quality of life of informal carers and their experiences of primary care
This study aims to describe the health-related quality of life and primary care experiences of informal carers in England responding to the national General Practice Patient Survey, and to examine variation among carers reported by socio-demographic characteristics and level of caregiving commitment
Informal carers in England experience a double disadvantage of poorer health and worse patient experience in primary care when compared to non-carers of similar age, gender, ethnicity and level of social deprivation in a study of 195,364 carers responding to a national primary care-based survey

Summary

Introduction

We aim to describe the health-related quality of life of informal carers and their experiences of primary care. Promoting and protecting the health and wellbeing of informal carers is an important public health priority for both pragmatic and ethical reasons [1, 2], and the provision of high quality primary care services for carers is central to such efforts [3, 4]. Informal care is set to take on an increasingly important role in supporting formal health services due to demographic changes associated with population aging and increasing financial pressures on healthcare [9, 12, 13].

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