Quality-of-life measures for use within care homes: a systematic review of their measurement properties

Aspden, Trefor; Bradshaw, Siobhan; Playford, E Diane; Riazi, Afsane

doi:10.1093/ageing/afu089

Cited by 50 publications

(74 citation statements)

References 30 publications

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“…Different observational methods are available and validated to measure QOL in persons with moderate to severe dementia in LTCFs [7,50,51,52,53], and some have good psychometric properties [8,9]. These observational instruments employ different domains of QOL that are important for persons with dementia.…”

Section: Discussionmentioning

confidence: 99%

“…These observational instruments employ different domains of QOL that are important for persons with dementia. The QUALIDEM is recommended to evaluate QOL in severe dementia [9]; it focuses on the QOL domains that are judged important for persons with dementia, even in severe end-stage dementia [54]. Although other QOL instruments, such as the QUALID, are also developed to measure QOL in this population, the specific characteristic of the QUALIDEM is the differentiation in separate domains of QOL.…”

Section: Discussionmentioning

confidence: 99%

“…Therefore, the definitions of QOL in studies measuring QOL in dementia generally use several dimensions, which reflects that QOL in dementia is a multidimensional concept. Depending on their theoretical background, these different domains can include items related to physical and psychological wellbeing, social interaction, and positive/negative affect [6,7,8,9]. …”

Section: Introductionmentioning

confidence: 99%

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Characteristics Associated with Quality of Life in Long-Term Care Residents with Dementia: A Cross-Sectional Study

Klapwijk

Caljouw

Pieper

et al. 2016

Dement Geriatr Cogn Disord

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Background: To determine which characteristics are associated with quality of life (QOL) in residents with moderate to very severe dementia in long-term care facilities (LTCFs). Material and Methods: This was a cross-sectional analysis of a cluster randomized controlled study in 12 Dutch LTCFs that enrolled 288 residents, with moderate to severe dementia assessed with the Reisberg Global Deterioration Scale (Reisberg GDS) and QOL with the QUALIDEM. Characteristics that were hypothesized to be associated with the six domains of QOL (applicable to very severe dementia) included demographic variables, activities of daily living (Katz ADL), cognitive performance (Cognitive Performance Scale; CPS), pain (Pain Assessment Checklist for Seniors with Limited Ability to Communicate; PACSLAC-D), neuropsychiatric symptoms (Neuropsychiatric Inventory-Nursing Home Version; NPI-NH) and comorbidities. Results: Multivariate logistic regression modelling showed associations with age in the domain Social isolation [odds ratio, OR, 0.95 (95% confidence interval, CI, 0.91-0.99)], ADL level in the domain Positive affect [OR 0.89 (95% CI 0.83-0.95)] and the domain Social relations [OR 0.87 (95% CI 0.81-0.93)], severity of dementia in the domain Social relations [OR 0.28 (95% CI 0.12-0.62)] and in the domain Social isolation [OR 2.10 (95% CI 1.17-3.78)], psychiatric disorders in the domain Positive affect [OR 0.39 (95% CI 0.17-0.87)] and pulmonary diseases in the domain Negative affect [OR 0.14 (95% CI 0.03-0.61)] of the QUALIDEM. Neuropsychiatric symptoms were independently associated with all six domains of the QUALIDEM [OR 0.93 (95% CI 0.90-0.96) to OR 0.97 (95% CI 0.95-0.99)]. Pain was associated with the domains Care relationship [OR 0.92 (95% CI 0.84-1.00)] and Negative affect [OR 0.92 (95% CI 0.85-1.00)]. Conclusion: QOL in dementia is independently associated with age, ADL, dementia severity, pain, psychiatric disorders, pulmonary diseases and neuropsychiatric symptoms. It is possible to detect persons with dementia at risk for a lower QOL. This information is important for developing personalized interventions to improve QOL in persons with dementia in LTCFs.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Characteristics Associated with Quality of Life in Long-Term Care Residents with Dementia: A Cross-Sectional Study

Klapwijk

Caljouw

Pieper

et al. 2016

Dement Geriatr Cogn Disord

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“…As over half of residents die within 1 year of moving into a care home [3] and there is currently no cure for dementia, ensuring that individuals living with the condition maintain their quality of life is a priority within care homes. Quality of life (QoL) is often a key outcome measure in research studies evaluating the effectiveness of interventions in care home settings [4]. Additionally, changes in QoL have been examined as an indicator of the progression of dementia; studies show residents with a higher dependency on staff generally have a lower quality of life [5].…”

mentioning

confidence: 99%

Exploring self-report and proxy-report quality-of-life measures for people living with dementia in care homes

et al. 2019

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Purpose There are many validated quality-of-life (QoL) measures designed for people living with dementia. However, the majority of these are completed via proxy-report, despite indications from community-based studies that consistency between proxy-reporting and self-reporting is limited. The aim of this study was to understand the relationship between self-and proxy-reporting of one generic and three disease-specific quality-of-life measures in people living with dementia in care home settings. Methods As part of a randomised controlled trial, four quality-of-life measures (DEMQOL, EQ-5D-5L, QOL-AD and QUALID) were completed by people living with dementia, their friends or relatives or care staff proxies. Data were collected from 726 people living with dementia living in 50 care homes within England. Analyses were conducted to establish the internal consistency of each measure, and inter-rater reliability and correlation between the measures. Results Residents rated their quality of life higher than both relatives and staff on the EQ-5D-5L. The magnitude of correlations varied greatly, with the strongest correlations between EQ-5D-5L relative proxy and staff proxy. Internal consistency varied greatly between measures, although they seemed to be stable across types of participants. There was poor-to-fair inter-rater reliability on all measures between the different raters. Discussion There are large differences in how QoL is rated by people living with dementia, their relatives and care staff. These inconsistencies need to be considered when selecting measures and reporters within dementia research.

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“…In the general population, QoL can vary depending on different characteristics such as age, gender, marital status, and morbidity . Fortunately, more knowledge has become available regarding how to measure and follow the course of QoL, both at home and in a nursing home . Various theoretical models form the basis of the development of these QoL instruments, and, for many, a multidimensional concept has been used .…”

Section: Introductionmentioning

confidence: 99%

Change in quality of life after a multidisciplinary intervention for people with dementia: A cluster randomized controlled trial

Klapwijk

Caljouw

Pieper

et al. 2018

Int J Geriat Psychiatry

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Quality-of-life measures for use within care homes: a systematic review of their measurement properties

Cited by 50 publications

References 30 publications

Characteristics Associated with Quality of Life in Long-Term Care Residents with Dementia: A Cross-Sectional Study

Characteristics Associated with Quality of Life in Long-Term Care Residents with Dementia: A Cross-Sectional Study

Exploring self-report and proxy-report quality-of-life measures for people living with dementia in care homes

Change in quality of life after a multidisciplinary intervention for people with dementia: A cluster randomized controlled trial

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