Evidence map›Paper›PMID 31030366›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2019

Measuring the quality of life of family carers of people with dementia: development and validation of C-DEMQOL.

Anna Brown, Thomas E Page, Stephanie Daley, Nicolas Farina, Thurstine Basset, Gill Livingston, Jessica Budgett, Laura Gallaher, Yvonne Feeney, Joanna Murray and 3 more

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Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
27citing papers in PubMed, 2 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

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.

2 · The registry

The trial behind it

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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

27 citing papers in PubMed, 2 syntheses or guidelines pooled it.

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  8. Assessing the psychometric performance of the EQ-5D-5L among informal caregivers of people with dementia.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024
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  12. Living well while providing support: validation of LTCQ-Carer for assessing informal carers' quality of life.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

13 authors.

Anna BrownSchool of Psychology, University of Kent, Canterbury, CT2 7NP, UK. a.a.brown@kent.ac.uk.ORCID http://orcid.org/0000-0002-5612-2627
Thomas E PageSchool of Psychology, University of Kent, Canterbury, CT2 7NP, UK.
Stephanie DaleyCentre for Dementia Studies, Brighton and Sussex Medical School, University of Sussex, Brighton, BN1 9RY, UK.
Nicolas FarinaCentre for Dementia Studies, Brighton and Sussex Medical School, University of Sussex, Brighton, BN1 9RY, UK.
Thurstine BassetLived Experience Advisory Panel, Sussex Partnership NHS Foundation Trust, Hove, BN3 7HQ, UK.
Gill LivingstonDivision of Psychiatry, University College London, London, W1T 7NF, UK.
Jessica BudgettDivision of Psychiatry, University College London, London, W1T 7NF, UK.
Laura GallaherCentre for Dementia Studies, Brighton and Sussex Medical School, University of Sussex, Brighton, BN1 9RY, UK.
Yvonne FeeneyCentre for Dementia Studies, Brighton and Sussex Medical School, University of Sussex, Brighton, BN1 9RY, UK.
Joanna MurrayInstitute of Psychiatry, Psychology & Neuroscience, King's College London, London, SE5 8AF, UK.
Ann BowlingHealth Sciences, University of Southampton, Southampton, SO17 1BJ, UK.
Martin KnappDepartment of Social Policy, London School of Economics, London, CT1 3LX, UK.
Sube BanerjeeCentre for Dementia Studies, Brighton and Sussex Medical School, University of Sussex, Brighton, BN1 9RY, UK.

Funding

Alzheimer's Society (UK) 234 ASPG14017
6 · The paper itself

Abstract

purposeWe aimed to address gaps identified in the evidence base and instruments available to measure the quality of life (QOL) of family carers of people with dementia, and develop a new brief, reliable, condition-specific instrument.

methodsWe generated measurable domains and indicators of carer QOL from systematic literature reviews and qualitative interviews with 32 family carers and 9 support staff, and two focus groups with 6 carers and 5 staff. Statements with five tailored response options, presenting variation on the QOL continuum, were piloted (n = 25), pre-tested (n = 122) and field-tested (n = 300) in individual interviews with family carers from North London and Sussex. The best 30 questions formed the C-DEMQOL questionnaire, which was evaluated for usability, face and construct validity, reliability and convergent/discriminant validity using a range of validation measures.

resultsC-DEMQOL was received positively by the carers. Factor analysis confirmed that C-DEMQOL sum scores are reliable in measuring overall QOL (ω = 0.97) and its five subdomains: 'meeting personal needs' (ω = 0.95); 'carer wellbeing' (ω = 0.91); 'carer-patient relationship' (ω = 0.82); 'confidence in the future' (ω = 0.90) and 'feeling supported' (ω = 0.85). The overall QOL and domain scores show the expected pattern of convergent and discriminant relationships with established measures of carer mental health, activities and dementia severity and symptoms.

conclusionsThe robust psychometric properties support the use of C-DEMQOL in evaluation of overall and domain-specific carer QOL; replications in independent samples and studies of responsiveness would be of value.

Indexed as

AdultAgedAged, 80 and overCaregiversDementiaEmotionsFactor Analysis, StatisticalFemaleFocus GroupsHumansLondonMaleMiddle AgedPsychometricsQuality of LifeReproducibility of ResultsAlzheimer’s diseaseBifactor modelCaregiverDementiaFactor analysisFamily carerQuality of life

Identifiers

PMID31030366
PMCPMC6620239

What OpenQuestion holds

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LicenceCC BY
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Registered trials

None linked

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.