Health economics research into supporting carers of people with dementia: a systematic review of outcome measures
Open accessAbstract
Advisory bodies, such as the National Institute for Health and Clinical Excellence (NICE) in the UK, advocate using preference based instruments to measure the quality of life (QoL) component of the quality-adjusted life year (QALY). Cost per QALY is used to determine cost-effectiveness, and hence funding, of interventions. QALYs allow policy makers to compare the effects of different interventions across different patient groups. Generic measures may not be sensitive enough to fully capture the QoL effects for certain populations, such as carers, so there is a need to consider additional outcome measures, which are preference based where possible to enable cost-effectiveness analysis to be undertaken. This paper reviews outcome measures commonly used in health services research and health economics research involving carers of people with dementia. An electronic database search was conducted in PubMed, Medline, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, the National Health Service Economic Evaluation Database (NHS EED), Database of Abstracts of Reviews of Effects (DARE) and Health Technology Assessment database. Studies were eligible for inclusion if they included an outcome measure for carers of people with dementia. 2262 articles were identified. 455 articles describing 361 studies remained after exclusion criteria were applied. 228 outcome measures were extracted from the studies. Measures were categorised into 44 burden measures, 43 mastery measures, 61 mood measures, 32 QoL measures, 27 social support and relationships measures and 21 staff competency and morale measures. The choice of instrument has implications on funding decisions; therefore, researchers need to choose appropriate instruments for the population being measured and the type of intervention undertaken. If an instrument is not sensitive enough to detect changes in certain populations, the effect of an intervention may be underestimated, and hence interventions which may appear to be beneficial to participants are not deemed cost-effective and are not funded. If this is the case, it is essential that additional outcome measures which detect changes in broader QoL are included, whilst still retaining preference based utility measures such as EQ-5D to allow QALY calculation for comparability with other interventions.
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More recently developed specific measures of carer QoL such as the Carer Experience Scale and the Care Related Quality of Life (CarerQol) may be more appropriate as they can detect the broader impact of caring on a carer's life.
“Instead, more recently developed specific measures of carer QoL such as the Carer Experience Scale (Al-Janabi et al. , 2008) and the Care Related Quality of Life (CarerQol) (Brouwer et al. , 2006) (e.g., the assessment of activities outside caring, carer-recipient relationship) may be more appropriate as it can detect the broader impact of caring on a carers' life (Jones et al. , 2012).”
From Which interventions work for dementia family carers?: an updated systematic review of randomized controlled trials of carer interventions. (2018) · cites this paper as Jones et al., 2012
The Discussion (page unavailable) says population-specific measures cover broader domains and may be more sensitive than generic instruments; it also notes that the EQ-5D may miss changes in dementia carers’ quality of life. This supports the general rationale for considering carer-focused measures, but our copy does not identify the Carer Experience Scale or CarerQol or establish that those particular measures detect the broader impacts described. (LLM, conf=0.82)
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- Authors
- Jones, C., Edwards, R. T., & Hounsome, B.
- Affiliations
- Bangor University (GB)
- Corresponding author
- Jones, Carys
- Venue
- Health and Quality of Life Outcomes
- Published
- 2012
- Volume
- 10
- Issue
- 1
- Pages
- 142
- ISSN
- 1477-7525 (ISSN-L)
- PMC
- PMC3541129
- OpenAlex
- W2163767644
- Cited by
- 24
- References
- 51
- Citations by year
- 2025: 1 · 2024: 2 · 2022: 1 · 2021: 1 · 2019: 4 · 2018: 9 · 2017: 1 · 2016: 1 · 2015: 1 · 2014: 2 · 2013: 1
- FWCI
- 0.49
- 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)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
- Bangor University Research Portal (Bangor University) (submittedVersion, other-oa)
- Funders
- Bangor University
- 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 › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Keywords
- dementia caregivers, outcome measures, quality of life, cost-effectiveness, quality-adjusted life years, EQ-5D, caregiver burden, mastery, mood, social support, employee skills, health economics
- MeSH terms
- Dementia, United Kingdom, Health Services Research, Humans, Quality of Life, Surveys and Questionnaires, Social Support, Caregivers, Outcome Assessment, Health Care, Quality-Adjusted Life Years
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