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A novel method of proxy reporting questionnaire based measures of health-related quality of life of people with dementia in residential care: a psychometric evaluation

Authors Smith SC, Hendriks AAJ, Regan J, Black N

Received 14 June 2017

Accepted for publication 23 January 2018

Published 5 July 2018 Volume 2018:9 Pages 221—230

DOI https://doi.org/10.2147/PROM.S144000

Checked for plagiarism Yes

Review by Single-blind

Peer reviewers approved by Dr Colin Mak

Peer reviewer comments 2

Editor who approved publication: Dr Liana Bruce (formerly Castel)


Sarah C Smith, AA Jolijn Hendriks, Jemma Regan, Nick Black

Department of Health Services Research and Policy, London School of Hygiene and Tropical Medicine, London, UK

Background: In research in residential care, health-related quality of life (HRQL) is usually measured using either observational methods or standardized questionnaires. DEMQOL-Proxy is a standardized questionnaire measuring HRQL of people with dementia and is usually reported by a family carer. However, not all residents have a family carer who visits often enough to act as a proxy.
Objectives: We evaluated the psychometric performance of DEMQOL-Proxy when reported on behalf of people with dementia in residential care by a “trained proxy” (DEMQOL-Proxy-TP).
Participants: We recruited a sample of 87 people with dementia living in care homes around the UK.
Methods: We used modern psychometric methods (based on the Rasch model) to evaluate DEMQOL-Proxy-TP (on behalf of 85 residents) in a cross-sectional study. We evaluated scale-to-sample targeting, ordering of item thresholds, item fit to the model and differential item functioning (sex, age, type of dementia), local independence, unidimensionality and reliability on the full set of items (31 items) and also a smaller item set (26 items).
Results: The smaller item set (DEMQOL-Proxy-TP-26) performed better than the original item set and was found to fit the model (p = 0.68). Nevertheless, 17 items were found to have disordered thresholds, and 24 pairs of items showed local dependency (residual correlations >0.3). There were also some areas where scale-to-sample targeting could be improved.
Conclusion: After resolving the identified anomalies, DEMQOL-Proxy-TP can provide adequate measurement of HRQL of people with dementia living in residential care, particularly when no family carer is available. This can be interpreted at the group level but is not yet robust enough for use at the individual level. Future work will compare these results with the psychometric performance of DEMQOL-Proxy reported by family carers and DEMQOL self-reported by the residents.

Keywords: dementia, DEMQOL-Proxy, health-related quality of life, Rasch Measurement Theory, trained proxy

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