An Empirical Comparison of the EQ-5D-5L, DEMQOL-U and DEMQOL-Proxy-U in a Post-Hospitalisation Population of Frail Older People Living in Residential Aged Care

Ratcliffe, Julie; Flint, Thomas A.; Easton, Tiffany; Killington, Maggie; Cameron, Ian D.; Davies, Owen; Whitehead, Craig; Kurrle, Susan; Miller, Michelle; Liu, Enwu; Crotty, Maria

doi:10.1007/s40258-016-0293-7

Cited by 24 publications

(27 citation statements)

References 32 publications

(42 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…We also identified a moderate correlation between the informal-carer-completed EQ-5D-5L-proxy and DEMQOL-Proxy-U, with the DEMQOL-Proxy-U providing higher utility scores especially at lower levels. These results closely resemble those of the 2 comparable Australian studies 4,9 (eg, we reported rho = 0.386, versus 0.389 in 1 of the Australian studies, and a mean difference of 0.214 versus 0.202). These results might have arisen because the EQ-5D-5L has a much lower bound than the DEMQOL-Proxy-U (20.285 vs 0.363, respectively).…”

Section: If Researchers Opt For Proxy-completed Pbms Does It Matter supporting

confidence: 87%

“…Three existing (repeated) cross-sectional studies compared various combinations of resident-completed and proxy-completed versions of the EQ-5D and the DEMQOL in Britain 19 or Australia. 4,9 In contrast to our study, these included people without dementia 4 or people who were restricted to unrepresentative subgroups (eg, people recently hospitalized 9 or with significant depressive symptoms). 19 None of these studies compared formal-carer with informal-carer proxies or DEMQOL-Proxy-U with other quality of life measures (QOL-AD-NH and QUALID), and of the studies did not compare self-and proxy-responses for the same residents.…”

Section: Comparison With Existing Studiesmentioning

confidence: 97%

“…8 The data include a rich combination of resident-completed, proxy-reported, generic, and dementia-specific PBMs in addition to other non-PBM cognitive and HRQOL measures. Although two Australian 4,9 studies have compared the included PBMs, this UKbased study used larger sample sizes, compared more cognitive health and HRQOL measures, and involved modeling temporal within-individual changes, using panel data regression techniques.…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

How Should We Capture Health State Utility in Dementia? Comparisons of DEMQOL-Proxy-U and of Self- and Proxy-Completed EQ-5D-5L

et al. 2019

View full text Add to dashboard Cite

Background: Dementia-specific and proxy-completed preference-based measures have been proposed for use in intervention studies involving people living in residential care, in instances where generic, self-reported preference-based measures have been deemed inappropriate. Objective: This study was conducted to investigate the construct validity, criterion validity, and responsiveness of DEMQOL-Proxy-U and of self-and proxy-completed EQ-5D-5L. Methods: The analysis used a 3-wave, individual-level data set of 1004 people living with dementia in residential care that included self-completed EQ-5D-5L and formal-carer and informal-carer proxy-completed EQ-5D-5L and DEMQOL-Proxy-U utility values, in addition to other nonutility cognitive measures (Functional Assessment Staging [FAST], Clinical Dementia Rating [CDR], Cohen-Mansfield Agitation Inventory [CMAI]) and health-related quality of life (HRQOL) measures (nursing home version of the Quality of Life with Alzheimer's disease scale [QOL-AD-NH], Quality of Life in Late-Stage Dementia [QUALID] scale). Construct validity, criterion validity, and responsiveness were assessed using correlation, Bland-Altman plots, and panel data regression models. Results: Self-completed EQ-5D-5L failed to reflect clinically important differences and changes in FAST, CDR, and CMAI but did capture the resident's own view of HRQOL (QOL-AD-NH). As dementia severity increased, collection of EQ-5D-5L-proxy and DEMQOL-Proxy-U data was more feasible than collection of self-completed EQ-5D-5L. These formal-carer and informal-carer proxy measures also better reflected changes in FAST, CDR, and CMAI but did not capture the resident's own view of HRQOL (QOL-AD-NH), despite adequately capturing the proxy's own view of the resident's HRQOL (QUALID). This indicates discrepancies between a proxy's view and resident's view of the impact that tangible declines in health, cognition, or functional abilities have on HRQOL. The EQ-5D-5L-proxy and DEMQOL-Proxy-U were generally poor substitutes. Regardless of which proxy completed it, the EQ-5D-5L-proxy was typically more responsive than the DEMQOL-Proxy-U to changes in CDR, FAST, and CMAI, indicating that use of the DEMQOL-Proxy-U is not always justified. Conclusion: Disparities in the measurement properties of different utility measures mean that choices about how to measure utility in trials could affect economic evaluation outcomes and hence how resources are allocated for dementia care.

show abstract

Section: If Researchers Opt For Proxy-completed Pbms Does It Matter supporting

confidence: 87%

Section: Comparison With Existing Studiesmentioning

confidence: 97%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

How Should We Capture Health State Utility in Dementia? Comparisons of DEMQOL-Proxy-U and of Self- and Proxy-Completed EQ-5D-5L

et al. 2019

View full text Add to dashboard Cite

show abstract

“…Interventions aimed at alleviating symptoms which may lead to agitation in advanced dementia, such as treatment of pain according to the stepwise protocols can be effective (Husebo et al, 2011). Economic evaluation of such interventions should use a standard outcome of quality-adjusted life years, using measures such as DEMQOL (Ratcliffe et al, 2017) in a clinical trial, to allow for costeffectivenessanalysis.…”

Section: Directions For Further Researchmentioning

confidence: 99%

Healthcare utilization and monetary costs associated with agitation in UK care home residents with advanced dementia: a prospective cohort study

Gola

Morris

Candy

et al. 2020

Int. Psychogeriatr.

View full text Add to dashboard Cite

Objective:Nearly half of care home residents with advanced dementia have clinically significant agitation. Little is known about costs associated with these symptoms toward the end of life. We calculated monetary costs associated with agitation from UK National Health Service, personal social services, and societal perspectives.Design:Prospective cohort study.Setting:Thirteen nursing homes in London and the southeast of England.Participants:Seventy-nine people with advanced dementia (Functional Assessment Staging Tool grade 6e and above) residing in nursing homes, and thirty-five of their informal carers.Measurements:Data collected at study entry and monthly for up to 9 months, extrapolated for expression per annum. Agitation was assessed using the Cohen-Mansfield Agitation Inventory (CMAI). Health and social care costs of residing in care homes, and costs of contacts with health and social care services were calculated from national unit costs; for a societal perspective, costs of providing informal care were estimated using the resource utilization in dementia (RUD)-Lite scale.Results:After adjustment, health and social care costs, and costs of providing informal care varied significantly by level of agitation as death approached, from £23,000 over a 1-year period with no agitation symptoms (CMAI agitation score 0–10) to £45,000 at the most severe level (CMAI agitation score >100). On average, agitation accounted for 30% of health and social care costs. Informal care costs were substantial, constituting 29% of total costs.Conclusions:With the increasing prevalence of dementia, costs of care will impact on healthcare and social services systems, as well as informal carers. Agitation is a key driver of these costs in people with advanced dementia presenting complex challenges for symptom management, service planners, and providers.

show abstract

“…MMSE; EQ5D and DEMQoL (33)(34)(35)(36), are used in almost all RCTs conducted in care homes. Additionally, clinical indicators such as hospitalisations, falls, and death rates are routinely reported (see Appendix 2: Examples of data available from each trial.…”

Section: Database Of Trial Summariesmentioning

confidence: 99%

Protocol for the Development of a Repository of Individual Participant Data From Randomised Controlled Trials Conducted in UK Adult Care Homes (The Virtual International Care Homes Trials Archive (VICHTA))

Irvine

Burton

Ali

et al. 2020

Preprint

View full text Add to dashboard Cite

Background Approximately 418,000 people live in care homes in the UK, yet accessible, robust data on care home populations and organisation are lacking. This hampers our ability to plan, allocate resources or prevent risk. Large randomised controlled trials (RCTs) conducted in care homes offer a potential solution. The value of detailed data on residents’ demographics, outcomes and contextual information captured in RCTs has yet to be fully realised. Irrespective of the intervention tested, much of the trial data collected overlaps, in terms of structured assessments and descriptive information. Given the time and costs required to prospectively collect data in these populations, pooling anonymised RCT data into a structured repository offers benefit; secondary analyses of pooled RCT data can improve understanding of this under-researched population, and enhance future trial design. This protocol describes the creation of a repository of individual participant data (IPD) from trials conducted in care homes, to address the need for accurate, high quality IPD on this vulnerable population.Methods Informed by scoping of relevant literature, the principal investigators of RCTs conducted in adult care homes in UK since 2010 will be invited to contribute trial IPD. Contributing trialists will form a Steering Committee, who will oversee data sharing and remain gatekeepers of their own trial’s data. IPD will be cleaned and standardised in consultation with the Steering Committee for accuracy. Planned analyses include comparison of pooled IPD with point estimates from administrative sources, to assess generalisability of RCT data to the wider care home population. We will also identify key resident characteristics and outcomes from within the trial repository, which will inform development of a national minimum dataset for care homes. Following project completion, management will migrate to the Virtual Trials Archives, forming a legacy dataset which will be accessible to the wider research community for analyses. Discussion Analysis of pooled IPD has the potential to inform and direct future practice, research and policy at low cost, enhancing the value of existing data and reducing research waste. We aim to create a permanent archive for care home trial data, and welcome the contribution of emerging trial datasets.

show abstract

An Empirical Comparison of the EQ-5D-5L, DEMQOL-U and DEMQOL-Proxy-U in a Post-Hospitalisation Population of Frail Older People Living in Residential Aged Care

Cited by 24 publications

References 32 publications

How Should We Capture Health State Utility in Dementia? Comparisons of DEMQOL-Proxy-U and of Self- and Proxy-Completed EQ-5D-5L

How Should We Capture Health State Utility in Dementia? Comparisons of DEMQOL-Proxy-U and of Self- and Proxy-Completed EQ-5D-5L

Healthcare utilization and monetary costs associated with agitation in UK care home residents with advanced dementia: a prospective cohort study

Protocol for the Development of a Repository of Individual Participant Data From Randomised Controlled Trials Conducted in UK Adult Care Homes (The Virtual International Care Homes Trials Archive (VICHTA))

Contact Info

Product

Resources

About

An Empirical Comparison of the EQ-5D-5L, DEMQOL-U and DEMQOL-Proxy-U in a Post-Hospitalisation Population of Frail Older People Living in Residential Aged Care

Cited by 24 publications

References 32 publications

How Should We Capture Health State Utility in Dementia? Comparisons of DEMQOL-Proxy-U and of Self- and Proxy-Completed EQ-5D-5L

How Should We Capture Health State Utility in Dementia? Comparisons of DEMQOL-Proxy-U and of Self- and Proxy-Completed EQ-5D-5L

Healthcare utilization and monetary costs associated with agitation in UK care home residents with advanced dementia: a prospective cohort study

Protocol for the Development of a Repository of Individual Participant Data From Randomised Controlled Trials Conducted in&nbsp;UK Adult Care Homes (The Virtual International Care Homes Trials Archive (VICHTA))

Contact Info

Product

Resources

About

Protocol for the Development of a Repository of Individual Participant Data From Randomised Controlled Trials Conducted in UK Adult Care Homes (The Virtual International Care Homes Trials Archive (VICHTA))