ArticlePharmacoEconomics2026
Developing a Quality-of-Life Measure for Carers of People with Dementia for Use in Economic Evaluations: Results from the COCOON Project.
Article in PharmacoEconomics, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
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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.
The trial behind it
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Who cites it
1 citing paper in PubMed.
- Developing an Australian Value Set for the COCOON Carer Quality-of-Life Measure for Use in Economic Evaluations.PharmacoEconomics · 2026Article
Corrections and comments
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Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
BACKGROUND AND
objectiveProviding informal care to a person with dementia can substantially affect carers' quality of life. Existing generic preference-weighted measures (e.g. EQ-5D-5L) may not fully capture the caring experience, while carer-specific measures (e.g. CarerQol), although preference weighted, cannot be used to derive quality-adjusted life-years for cost-utility analysis. The COCOON project aimed to develop a new preference-weighted quality-of-life measure for carers of people living with dementia that is suitable for cost-utility analysis.
methodsDevelopment of the descriptive system was informed by: (1) a literature review; (2) qualitative interviews with carers of people with dementia to assess face validity of candidate items; (3) an online survey of carers to evaluate psychometric performance (including missing data, distributions, known-group validity, convergent validity, exploratory factor analysis and item response theory analysis); and (4) consultation with an advisory group.
resultsAn initial pool of 60 candidate items was reduced to 44 items for qualitative testing. Following interviews, the item set was refined to 35 items. Based on psychometric analyses and final advisory group consultation, the final descriptive system comprised seven items: emotional health, physical health, loss and grief, loss of freedom, loneliness, support and financial burden. Each item is measured using a five-point frequency scale from 'never' to 'always'.
conclusionsThe COCOON measure is grounded in the lived experiences of carers of people living with dementia, capturing the multidimensional facets of dementia caregiving and offers a conceptually robust and policy-relevant measure for assessing carers' quality of life in economic evaluations.
Identifiers
42698057What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.