How useful is the EQ-5D in assessing the impact of caring for people with Alzheimer's disease?
Open accessAbstract
BACKGROUND: The impact on informal caregivers of caring for people with Alzheimer's disease (AD) dementia can be substantial, but it remains unclear which measures(s) best assess such impact. Our objective was to use data from the GERAS study to assess the ability of the EuroQol 5-dimension questionnaire (EQ-5D) to measure the impact on caregivers of caring for people with AD dementia and to examine correlations between EQ-5D and caregiver burden. METHODS: GERAS was a prospective, non-interventional cohort study in community-dwelling patients with AD dementia and their informal caregivers. The EQ-5D and Zarit Burden Interview (ZBI) were used to measure health-related quality of life and caregiver burden, respectively. Resource-use data collected included caregiver time spent with the patient on activities of daily living (ADL). Spearman correlations were computed between EQ-5D scores, ZBI scores, and time spent on instrumental ADL (T-IADL) at baseline, 18 months, and for 18-month change scores. T-IADL and ZBI change scores were summarized by EQ-5D domain change category (better/stable/worse). RESULTS: At baseline, 1495 caregivers had mean EQ-5D index scores of 0.86, 0.85, and 0.82, and ZBI total scores of 24.6, 29.4, and 34.1 for patients with mild, moderate, and moderately severe/severe AD dementia, respectively. Change in T-IADL showed a stronger correlation with change in ZBI (0.12; P < 0.001) than with change in EQ-5D index score (0.02; P = 0.546) although both correlations were very weak. Worsening within EQ-5D domains was associated with increases in ZBI scores, although 68%-90% of caregivers remained stable within each EQ-5D domain. There was no clear pattern for change in T-IADL by change in EQ-5D domain. CONCLUSIONS: EQ-5D may not be the optimum measure of the impact of caring for people with AD dementia due to its focus on physical health. Alternative measures need further investigation.
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In the area of care provision, health-related or generic QoL measures may not be the most suitable to detect key areas of need for carers.
“In the area of care provision, such 'health-related' or 'generic' QoL measures (e.g., the assessment of mobility problems) may not be the most suitable to detect key areas of need for carers (Reed et al. , 2017).”
From Which interventions work for dementia family carers?: an updated systematic review of randomized controlled trials of carer interventions. (2018) · cites this paper as Reed et al., 2017
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- Authors
- Reed, C., Barrett, A., Lebrec, J., Dodel, R., Jones, R. W., Vellas, B., Wimo, A., Argimon, J. M., Bruno, G., & Haro, J. M.
- Affiliations
- Eli Lilly (United Kingdom) (GB)
- Philipps University of Marburg (DE)
- Royal United Hospital (GB)
- Centre Hospitalier Universitaire de Toulouse (FR)
- Karolinska Institutet (SE)
- Sapienza University of Rome (IT)
- Centro de Investigación Biomédica en Red de Salud Mental (ES)
- Corresponding author
- Reed, Catherine
- ORCID
- Venue
- Health and Quality of Life Outcomes
- Published
- 2017-01
- Volume
- 15
- Issue
- 1
- Pages
- 16-16
- ISSN
- 1477-7525 (ISSN-L)
- PMC
- PMC5251250
- OpenAlex
- W2571767533
- Cited by
- 49
- References
- 37
- Citations by year
- 2026: 6 · 2025: 4 · 2024: 9 · 2023: 5 · 2022: 9 · 2021: 6 · 2020: 4 · 2019: 4 · 2018: 1 · 2015: 1
- FWCI
- 4.42
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- cc-by
- Locations
- Health and Quality of Life Outcomes (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Dipòsit Digital de la Universitat de Barcelona (Universitat de Barcelona) (publishedVersion, cc-by)
- IRIS Research product catalog (Sapienza University of Rome) (submittedVersion, cc-by)
- RECERCAT (Consorci de Serveis Universitaris de Catalunya) (submittedVersion, cc-by)
- Funders
- Eli Lilly and Company
- Topics
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Keywords
- EQ-5D, Alzheimer's disease, dementia, informal caregivers, caregiver burden, Zarit Burden Interview, health-related quality of life, instrumental activities of daily living, outcome measure validity
- MeSH terms
- Activities of Daily Living, Adaptation, Psychological, Aged, Aged, 80 and over, Alzheimer Disease, Cross-Sectional Studies, Female, Germany, Humans, Male, Middle Aged, Prospective Studies, Quality of Life, Surveys and Questionnaires, Caregivers, Cost of Illness, Self Report
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