Measuring health related quality of life of care home residents, comparison of self-report with staff proxy responses for EQ-5D-5L and HowRu: protocol for assessing proxy reliability in care home outcome testing

Usman, Adeela; Lewis, Sarah; Hinsliff-Smith, Kathryn; Long, Annabelle; Housley, Gemma; Jordan, Jake; Gage, Heather; Dening, Tom; Gladman, John R.F.; Gordon, Adam L.

Abstract

Introduction
Research into interventions to improve health and wellbeing for older people living in care homes is increasingly common. Health-Related Quality of Life (HRQoL) is frequently used as an outcome measure but collecting both self-reported and proxy HRQoL measures is challenging in this setting. This study will investigate the reliability of UK care home staff as proxy respondents for the EQ-5D-5L and HowRu measures.

Methods and Analysis
This is a prospective cohort study of a sub-population of care home residents recruited to the larger Proactive Healthcare for Older People in Care Homes (PEACH) study. It will recruit residents ≥ 60 years across 24 care homes and not receiving short stay or respite care. The sample size is 160 participants. Resident and care home staff proxy EQ-5D-5L and HowRu responses will be collected monthly for three months. Weighted kappa statistics and intraclass correlation adjusted for clustering at the care home level will be used to measure agreement between resident and proxy responses. The extent to which staff variables (gender, age group, length of time caring, role, how well they know the resident, length of time working in care homes and in specialist gerontological practice) influence the level of agreement between self-reported and proxy responses will be considered using a multilevel mixed-effect regression model.

Ethics and Dissemination
The PEACH study protocol was reviewed by the UK Health Research Authority and University of Nottingham Research Ethics Committee and was determined to be a service development project. We will publish this study in a peer-reviewed journal with international readership and disseminate it through relevant national stakeholder networks and specialist societies.

Citation

Usman, A., Lewis, S., Hinsliff-Smith, K., Long, A., Housley, G., Jordan, J., Gage, H., Dening, T., Gladman, J. R., & Gordon, A. L. (2018). Measuring health related quality of life of care home residents, comparison of self-report with staff proxy responses for EQ-5D-5L and HowRu: protocol for assessing proxy reliability in care home outcome testing. BMJ Open, 8(8), 1-6. https://doi.org/10.1136/bmjopen-2018-022127

• Journal Article Type: Article
• Acceptance Date: Jul 27, 2018
• Online Publication Date: Aug 17, 2018
• Publication Date: Aug 17, 2018
• Deposit Date: Jul 27, 2018
• Publicly Available Date: Aug 20, 2018
• Journal: BMJ Open
• Electronic ISSN: 2044-6055
• Publisher: BMJ Publishing Group
• Peer Reviewed: Peer Reviewed
• Volume: 8
• Issue: 8
• Article Number: e022127
• Pages: 1-6
• DOI: https://doi.org/10.1136/bmjopen-2018-022127
• Public URL: https://nottingham-repository.worktribe.com/output/947999
• Publisher URL: https://bmjopen.bmj.com/content/8/8/e022127
• Contract Date: Jul 27, 2018