ArticleHealth and quality of life outcomes2018
Inter-rater agreement of the Quality of Life-Alzheimer's Disease (QoL-AD) self-rating and proxy rating scale: secondary analysis of RightTimePlaceCare data.
Article in Health and quality of life outcomes, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 papers, 3 of them syntheses that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
34 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Convergent validity of EQ-5D with core outcomes in dementia: a systematic review.Health and quality of life outcomes · 2022Pooled it
- A systematic review and psychometric evaluation of resilience measurement scales for people living with dementia and their carers.BMC medical research methodology · 2022Pooled it
- Palliative Care Intervention Trials for Adults Living With Progressive Central Nervous System Diseases and Their Caregivers: A Systematic Review.Journal of pain and symptom management · 2022Pooled it
- Trial
- Informant Perspectives on the Quality of Life of Healthy Older People, and People With Dementia Living in the Community and Care Facilities.Australasian journal on ageing · 2026Observational
- A brief checklist of modifiable dementia risk factors (RF12): associations with cognitive and affective measures in an Italian cohort.Frontiers in aging neuroscience · 2026Article
- Learning From People With Dementia What Works Well for Well-Being: Interviews and Focus Groups.The Gerontologist · 2024Article
- Determinants of quality of life in French nursing home residents across cognitive levels: a comparative study using convergent mixed-methods.BMC geriatrics · 2024Article
- No ordinary adult life: Living conditions from the perspective of adults with intellectual disabilities.Journal of intellectual disabilities : JOID · 2023Article
- Development of an item pool for a patient reported outcome measure of resilience for people living with dementia.Journal of patient-reported outcomes · 2023Article
- Reminiscence and Digital Storytelling to Improve the Social and Emotional Well-Being of Older Adults With Alzheimer's Disease and Related Dementias: Protocol for a Mixed Methods Study Design and a Randomized Controlled Trial.JMIR research protocols · 2023Article
- Behind the Scenes of a Technologically Enhanced Intervention for Caregivers of People With Dementia: Protocol for a Feasibility and Acceptability Study.JMIR research protocols · 2023Article
- Clinimetric Evaluation of the Experienced Communication in Dementia Questionnaire.The Gerontologist · 2023Observational
- Effects of the DICE Method to Improve Timely Recognition and Treatment of Neuropsychiatric Symptoms in Early Alzheimer's Disease at the Memory Clinic: The BEAT-IT Study.Journal of Alzheimer's disease : JAD · 2023Article
- Current development of biosensing technologies towards diagnosis of mental diseases.Frontiers in bioengineering and biotechnology · 2023Review
- Comparing the psychometric properties of EQ-5D-3L and EQ-5D-5L proxy ratings by informal caregivers and a health professional for people with dementia.Health and quality of life outcomes · 2022Article
- Experiences of Assistive Products and Home Care among Older Clients with and without Dementia in Sweden.International journal of environmental research and public health · 2022Article
- Effects of a person-centred and thriving-promoting intervention on nursing home residents' experiences of thriving and person-centredness of the environment.Nursing open · 2022Article
- Can Proxy Ratings Supplement Patient Report to Assess Functional Domains Among Hospitalized Patients?Archives of physical medicine and rehabilitation · 2022Article
- Concordance of self- and informant-rated depressive symptoms in nursing home residents with Dementia: cross-sectional findings.BMC psychiatry · 2022Article
Corrections and comments
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Authors and funding
13 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundTo assess the quality of life of people with dementia, measures are required for self-rating by the person with dementia, and for proxy rating by others. The Quality of Life in Alzheimer's Disease scale (QoL-AD) is available in two versions, QoL-AD-SR (self-rating) and QoL-AD-PR (proxy rating). The aim of our study was to analyse the inter-rater agreement between self- and proxy ratings, in terms of both the total score and the items, including an analysis specific to care setting, and to identify factors associated with this agreement.
methodsCross-sectional QoL-AD data from the 7th Framework European RightTimePlaceCare study were analysed. A total of 1330 cases were included: n = 854 receiving home care and n = 476 receiving institutional long-term nursing care. The proxy raters were informal carers (home care) and best-informed professional carers (institutional long-term nursing care). Inter-rater agreement was investigated using Bland-Altman plots for the QoL-AD total score and by weighted kappa statistics for single items. Associations were investigated by regression analysis.
resultsThe overall QoL-AD assessment of those with dementia revealed a mean value of 33.2 points, and the proxy ratings revealed a mean value of 29.8 points. The Bland-Altman plots revealed a poor agreement between self- and proxy ratings for the overall sample and for both care settings. With one exception (item 'Marriage' weighted kappa 0.26), the weighted kappa values for the single QoL-AD items were below 0.20, indicating poor agreement. Home care setting, dementia-related behavioural and psychological symptoms, and the functional status of the person with dementia, along with the caregiver burden, were associated with the level of agreement. Only the home care setting was associated with an increase larger than the predefined acceptable difference between self- and proxy ratings.
conclusionsProxy quality of life ratings from professional and informal carers appear to be lower than the self-ratings of those with dementia. QoL-AD-SR and QoL-AD-PR are therefore not interchangeable, as the inter-rater agreement differs distinctly. Thus, a proxy rating should be judged as a complementary perspective for a self-assessment of quality of life by those with dementia, rather than as a valid substitute.
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