ArticlePatient related outcome measures2018
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.
Article in Patient related outcome measures, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 1 of them a synthesis that pooled it.
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Who cites it
5 citing papers in PubMed, 1 synthesis or guideline pooled it, 10 citations in OpenAlex.
- Assessing the psychometric performance of EQ-5D-5L in dementia: a systematic review.Health and quality of life outcomes · 2022Pooled it
- Development of consensus-based considerations for use of adult proxy reporting: an ISOQOL task force initiative.Journal of patient-reported outcomes · 2023Review
- Feasibility and validity of EQ-5D-5L proxy by nurses in measuring health-related quality of life of nursing home residents.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2021Article
- Quality of life and caregiver burden in familial frontotemporal lobar degeneration: Analyses of symptomatic and asymptomatic individuals within the LEFFTDS cohort.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2020Article
- Neurological Health: Not Merely the Absence of Disease: Current Wellbeing Instruments Across the Spectrum of Neurology.American journal of lifestyle medicineArticle
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Authors and funding
4 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundIn 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.
objectivesWe 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).
participantsWe recruited a sample of 87 people with dementia living in care homes around the UK.
methodsWe 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).
resultsThe smaller item set (DEMQOL-Proxy-TP-26) performed better than the original item set and was found to fit the model (
conclusionAfter 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.
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