Successfully funded proposals
HQLC Dementia Carers Instrument Development: DECIDE
Applicant: Penny Wright
Institution: University of Leeds
Estimated awarded indexed: £575,753
Gateway for research: http://gtr.ukri.org/projects?ref=MR/M025179/1
DECIDE has 3 objectives:
- Develop a quality of life measure for carers of people with dementia (Carer-QoL)
- Test key assumptions embedded in the current approach to measuring the benefits of healthcare interventions and
- Estimate preliminary values for the Carer-QoL.
The project comprises 2 workstreams (psychometric and valuation) running in parallel. Workstream 1 psychometric (3 phases).
- Phase 1, item pool generation employing a needs-based approach through interviews of 42 purposively sampled carers.
- Phase 2, Item refinement following cognitive interviews with 24 carers.
- Phase 3, Psychometric evaluation employing Rasch methods to ensure the final item set is unidimensional and satisfies requirements necessary to enable transformation to interval scaling.
Carers (n=400) will complete the item pool and the EQ-5D with a subset re-completing the item pool for test-retest reliability and sensitivity to change analyses. Workstream 2 valuation (3 studies).
- Study 1 compares health state values (EQ-5D derived) in carers and non-carers (n=1,000) using online surveying of self-reported health status using visual analogue scale rating and presenting descriptions of 8 "hypothetical" health states selected from the most frequently recorded EQ-5D health states.
- Study 2 will estimate the relationship between a draft Carer-QoL (Workstream 1 generated) and the utility-weighted index form of EQ-5D.
- Study 3 will quantify Carer-QoL values through direct valuation using an online Discrete Choice Experiment.
Carer profiles will be generated from the draft carer-QoL items. Carers and non-carers (n=1,000) will select carer profile preference from a list of paired carer profiles. From this it will be possible to place a value on the Carer-QoL scores from both the carer and general population perspective.
DECIDE outputs and data will be available for other researchers, clinical, social and voluntary service organisations, practitioners and government agencies.