Using PROMs to assess HRQL of people with dementia in residential care
Research type
Research Study
Full title
PROMs in Dementia: Using Patient Reported Outcome Measures (PROMs) to assess health-related quality of life (HRQL) of people with dementia in residential care homes
IRAS ID
161247
Contact name
Sarah Smith
Contact email
Sponsor organisation
London School of Hygiene and Tropical Medicine
Duration of Study in the UK
1 years, 1 months, 1 days
Research summary
Background: Patient-reported outcome measures (PROMs) are increasingly used in health research to obtain information about patients’ perception of their quality of life. In dementia, when it is not possible for patients to self-report because of increasing severity, a proxy - such as a carer - sometimes reports on the patient’s behalf. DEMQOL-Proxy was developed to complement DEMQOL as a proxy reported measure of HRQL. It was designed to be reported by a family carer. A resident may not have regular relative visits, and professional staff may be inappropriate proxies. For the 300,000 people with dementia who live in residential care, the question is who is the most appropriate proxy?
Aim: To develop and evaluate a new method of obtaining HRQL reports from people with dementia in residential care using Trained Proxies.
Sample: 600 people with dementia and 200 family/friend visitors of people with dementia in residential care settings.
Design: Cross sectional study in 40 residential care homes across 4 regions in England.
Method: DEMQOL and DEMQOL-Proxy will be administered by Trained Proxies in the residential care setting to people with dementia. Trained Proxies will visit the people with dementia in the residential setting on four occasions to build rapport prior to completing DEMQOL-Proxy on their behalf. Family visitors will also complete DEMQOL-Proxy for the resident. The resident will complete DEMQOL if they are able.
Analysis: We will evaluate the psychometric properties of DEMQOL-Proxy administered by Trained Proxies. The analysis will use both Classical and Modern (Rasch analysis) psychometric methods. Rasch analysis will map the relationship between DEMQOL-Proxy reported by Trained Proxies and DEMQOL-Proxy reported by family visitors.
Implications: This offers a potential solution to the problem of obtaining reports of HRQL from people with dementia living in residential care who have no family carer, and potentially enables the quality of residential care to be evaluated.REC name
London - Queen Square Research Ethics Committee
REC reference
14/LO/1835
Date of REC Opinion
14 Nov 2014
REC opinion
Further Information Favourable Opinion