ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2019
Health-related quality of life in people with advanced dementia: a comparison of EQ-5D-5L and QUALID instruments.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 3 of them syntheses that pooled it.
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Who cites it
12 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Preference-based measures in people with dementia: a systematic review of psychometric properties.Health and quality of life outcomes · 2026Pooled it
- Exploring the impact of Namaste Care for individuals with advanced dementia: a systematic review of costs, effects and benefits.BMJ open · 2026Pooled it
- Assessing the psychometric performance of EQ-5D-5L in dementia: a systematic review.Health and quality of life outcomes · 2022Pooled it
- Cost-effectiveness of the Namaste care family program for nursing home residents with advanced dementia in comparison with usual care: a cluster-randomized controlled trial.BMC health services research · 2020Trial
- Examining the face validity of the EQ-HWB-9 in dementia: caregiver interpretation across "Today" and "7-Day" recall periods.Health and quality of life outcomes · 2026Article
- Primary data on symptom burden and quality of life among elderly patients at risk of dying during unplanned admissions to an NHS hospital: a cohort study using EuroQoL and the integrated palliative care outcome scale.BMC palliative care · 2024Article
- CELPI: trial protocol for a randomised controlled trial of a Carer End of Life Planning Intervention in people dying with dementia.BMC geriatrics · 2022Article
- The remarkably frequent use of EQ-5D in non-economic research.The European journal of health economics : HEPAC : health economics in prevention and care · 2022Article
- [Design and validation of a complex case evaluation index].Anales del sistema sanitario de Navarra · 2021Article
- Cost-effectiveness of a telehealth intervention for in-home dementia care support: Findings from the FamTechCare clinical trial.Research in nursing & health · 2021Article
- Mapping the Minnesota living with heart failure questionnaire (MLHFQ) to EQ-5D-5L in patients with heart failure.Health and quality of life outcomes · 2020Article
- Neurological Health: Not Merely the Absence of Disease: Current Wellbeing Instruments Across the Spectrum of Neurology.American journal of lifestyle medicineArticle
Corrections and comments
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Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAssessing health-related quality of life (HRQOL) in people with advanced dementia is challenging but important for informed decision-making. Proxy measurement of this construct is difficult and is often rated lower than self-report. Accurate proxy rating of quality of life in dementia is related to identification of concepts important to the person themselves, as well as the sensitivity of the measures used. The main aim of this study was to compare the performance of two instruments-QUALID and EQ-5D-5L-on measuring HRQOL in people with advanced dementia.
methodsIn a sub-study nested within a cluster-RCT we collected proxy(nurse)-completed EQ-5D-5L and QUALID measures at baseline, 3, 6, 9 and 12 months' follow-up for people with advanced dementia, residing in 20 nursing homes across Australia. Spearman's rank correlations, partial correlations and linear regressions were used to assess the relationship between the HRQOL instrument scores and their changes over time.
resultsThe mean weight from 284 people for the EQ-5D-5L and QUALID at baseline were 0.004 (95% CI - 0.026, 0.033) and 24.98 (95% CI 24.13, 25.82), respectively. At 12 months' follow-up, 115 participants remained alive. EQ-5D-5L weights and QUALID scores at baseline and at follow-up were moderately correlated (r = - 0.437; p < 0.001 at 12 months). Changes within QUALID and EQ-5D-5L across the same follow-up periods were also correlated (r = - 0.266; p = 0.005). The regression analyses support these findings.
conclusionWhilst these quality of life instruments demonstrated moderate correlation, the EQ-5D-5L does not appear to capture all aspects of quality of life that are relevant to people with advanced dementia and we cannot recommend the use of this instrument for use within this population. The QUALID appears to be a more suitable instrument for measuring HRQOL in people with severe dementia, but is not preference-based, which limits its application in economic evaluations of dementia care.
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