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Abstract
Objectives To compare assessments of health-related quality of life outcomes of care home residents reported by residents and care staff acting as proxies.
Design Linear regression and bivariate modelling of paired assessments from care home residents and care staff.
Setting 78 care homes in 2 regions in England.
Participants 556 care home residents aged 65 years or older and care staff.
Main outcome measures EQ-5D utility scores and responses to individual EQ-5D dimensions.
Results The depression status, cognitive function, physical function, activities of daily living, social engagement, pain and dementia diagnosis of care home residents all predicted discrepancies in EQ-5D reporting. For residents with no depressive symptoms, care staff underestimated residents' mean EQ-5D utility score by 0.134 (95% CI 0.097 to 0.171) and for those with severe depressive symptoms they overstated mean utility scores by 0.222 (95% CI 0.104 to 0.339). With increasing levels of pain in residents the care staff progressively estimated EQ-5D utilities above self-reported values; by 0.236 (95% CI 0.003 to 0.469) in those with the second highest pain scores. For those with no cognitive impairment, proxies overstated mean utility scores by 0.097 (95% CI 0.049 to 0.146), while for those with severe cognitive impairment they underestimated mean utility scores by 0.192 (95% CI 0.143 to 0.241).
Conclusions Care home residents and staff appear to differ fundamentally in their assessment of the health-related quality of life, as measured by the EQ-5D, of residents with different levels of depression, pain and/or cognitive impairment. This could lead to interventions evaluated using proxy-based quality-adjusted life year estimates being wrongly rejected on cost-effectiveness grounds and may also make it difficult for carers to act as advocates with health and social care professionals for certain groups of residents. A more resident-focussed approach to assessment of health-related quality of life is needed.
- utilities
- health-related quality of life
- EQ-5D
- care homes
- proxies
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Footnotes
Contributors BP and JM designed the analyses for this study. BP conducted the analyses and wrote the manuscript. All authors contributed to the design of the study and to the review of the published material in this area, as well as providing critical input into the writing and revising of the manuscript. MU is the guarantor of the article.
Funding The OPERA trial on which this study was based was funded by the National Institute for Health Research Health Technology Assessment programme grant number 06/02/01. This study relates to the results of the OPERA trial, trial registration number ISRCTN43769277 (http://www.isrctn.com/ISRCTN43769277). The Warwick Clinical Trials Unit, University of Warwick, benefited from facilities funded through the Birmingham Science City Translational Medicine Clinical Research and Infrastructure Trials Platform, with support from Advantage West Midlands.
Disclaimer The views expressed are those of the authors and not necessarily those of the funding bodies.
Competing interests None declared.
Ethics approval For the original OPERA study: ethical review for the study was provided by the Joint University College London/University College London Hospital Committees on the Ethics of Human Research (Committee A), now known as Central London REC 4. The REC reference for the study is 07/Q0505/56. The Committee also approved 10 Substantial Amendments for the study.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement No additional data are available.