ArticleBMC family practice2015
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.
Article in BMC family practice, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 33 papers, 3 of them syntheses that pooled it.
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Who cites it
33 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Quality of life assessment instruments for adults: a systematic review of population-based studies.Health and quality of life outcomes · 2020Pooled it
- Spillover Effects on Caregivers' and Family Members' Utility: A Systematic Review of the Literature.PharmacoEconomics · 2019Pooled it
- How best to assess quality of life in informal carers of people with dementia; A systematic review of existing outcome measures.PloS one · 2018Pooled it
- Deterioration of health-related quality of life: the hidden health burden of informal caregiving.The European journal of health economics : HEPAC : health economics in prevention and care · 2025Article
- A scoping review protocol for the application of intersectionality in primary care research.Systematic reviews · 2025Article
- Primary care experiences of family caregivers using the same medical facility as their care recipient or a different facility.Journal of general and family medicine · 2025Article
- How can healthcare professionals better support family caregivers in the final days of life: Could the "Family's Voice Diary" help? A qualitative study based in an area of high socio-economic deprivation.Palliative care and social practice · 2025Article
- Physical and Mental Health of Informal Carers from Culturally and Linguistically Diverse (CALD) and Non-CALD Groups in Australia.Healthcare (Basel, Switzerland) · 2024Article
- Physical pain among family caregivers to older adults: A scoping review of the literature.Journal of the American Geriatrics Society · 2024Article
- Building community engagement with caregivers through online interaction and a salutogenic approach in a period of isolation.Frontiers in medicine · 2024Article
- Living well with dementia: An exploratory matched analysis of minority ethnic and white people with dementia and carers participating in the IDEAL programme.International journal of geriatric psychiatry · 2024Article
- Supporting family carers in Ireland: the role of the general practitioner.Irish journal of medical science · 2023Article
- Article
- Cessation of Care for Frail Older Adults: Physical, Psychological and Economic Outcomes for Family Carers.International journal of environmental research and public health · 2022Article
- Caregiver wellbeing during Covid-19: does being hopeful play a role?Journal of affective disorders reports · 2021Article
- COVID-19 and UK family carers: policy implications.The lancet. Psychiatry · 2021Review
- A Novel Mobile App ("CareFit") to Support Informal Caregivers to Undertake Regular Physical Activity From Home During and Beyond COVID-19 Restrictions: Co-design and Prototype Development Study.JMIR formative research · 2021Article
- Tackling the complexity of gender bias in primary care.The British journal of general practice : the journal of the Royal College of General Practitioners · 2021Article
- Multiple long-term conditions within households and use of health and social care: a retrospective cohort study.BJGP open · 2021Article
- "It's like being on a roller coaster": the burden of caring for people with severe asthma.ERJ open research · 2021Article
Corrections and comments
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
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.
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