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Published in: BMC Primary Care 1/2015

Open Access 01-12-2015 | Research article

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

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

Published in: BMC Primary Care | Issue 1/2015

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Abstract

Background

We aim to describe the health-related quality of life of informal carers and their experiences of primary care.

Methods

Responses 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).

Results

Informal 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.

Conclusions

Informal 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.
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Metadata
Title
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
Authors
Gwilym P.A. Thomas
Catherine L. Saunders
Martin O. Roland
Charlotte A.M. Paddison
Publication date
01-12-2015
Publisher
BioMed Central
Published in
BMC Primary Care / Issue 1/2015
Electronic ISSN: 2731-4553
DOI
https://doi.org/10.1186/s12875-015-0277-y

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