ArticleAlzheimer's & dementia (New York, N. Y.)
Discrepancies between self- and proxy-rated quality of life in people living with dementia.
Article in Alzheimer's & dementia (New York, N. Y.). The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.
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Who cites it
10 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Preference-based measures in people with dementia: a systematic review of psychometric properties.Health and quality of life outcomes · 2026Pooled it
- Proxy reports on the EQ-5D-5L in residential aged care facilities: a validation study.Health and quality of life outcomes · 2026Trial
- Caregivers' proxy assessments of health-related quality of life in patients with hematologic malignancies.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026Article
- The economics of decision-making in dementia care and related life-limiting illness: a narrative review.Health economics review · 2026Review
- 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
- Validation of the Richards-Campbell Sleep Questionnaire Against Actigraphy in Hospitalized Patients and Its Association with Delirium Risk.Nature and science of sleep · 2026Article
- Mapping EQ-5D-5L Utilities in Dementia: Integrating Self and Proxy Reports.Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research · 2025Article
- The Cost-Effectiveness of an Intervention to Preserve Independence in People With Dementia (Vs. No Intervention): A Decision-Analytic (Markov) Model Analysis.International journal of geriatric psychiatry · 2025Article
- Enhancing HRQoL assessment for economic evaluation in dementia populations.Alzheimer's & dementia (New York, N. Y.)Article
- Discrepancies between self- and proxy-rated quality of life in people living with dementia.Alzheimer's & dementia (New York, N. Y.)Article
Corrections and comments
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Authors and funding
12 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionThe aim of this study was to analyze discrepancies between self- and proxy-rated health-related quality of life (HRQoL), measured with the EuroQol 5 Dimension 5 Level survey (EQ-5D-5L), in people living with dementia (PlwD) and their caregivers on an individual response level.
methodsEQ-5D-5L, sociodemographic and clinical data were obtained from baseline data of
resultsPlwD had a mean age of 80.1, nearly the half were female and 82.3% were mildly to moderately cognitively impaired. PlwD reported a higher utility index than caregiver proxies (mean 0.75 vs. 0.68, 83% of PlwD > 0.5). According to the PCHC and inconsistency approach, 95% of PlwD rated their health differently compared to proxies; 66% with divergent responses in at least three EQ-5D-5L dimensions. Nine dyads (5%) showed identical ratings. Discrepancies of one higher or lower EQ-5D-5L response represented the most frequent discrepancy (35.4%). Caregivers were two times more likely to report "moderate problems," representing the middle of the 5-point Likert scale. DISCUSSION: The central tendency bias observed in proxy-ratings could be associated with assessment uncertainties, resulting in an underestimation (overestimation) in PlwD reporting better (worse) health. This diverging trend extends the knowledge from previous studies and underlines the need for more methodological research in this area. Highlights: People living with dementia (PlwD) rate their health differently than proxies.Proxy-ratings over- or underestimate PlwD health when self-ratings are low or high.Proxies indicate a possible central tendency bias.Further research is needed to understand influencing factors.
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