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Successfully funded proposals

HQLC Dementia Carers Instrument Development: DECIDE

Reference: MR/M025179/1
Applicant: Penny Wright
Institution: University of Leeds
Tenure: 36
Year: 2015/16
Estimated awarded indexed: £575,753
Gateway for research: http://gtr.rcuk.ac.uk/projects?ref=MR/M025179/1 

DECIDE has 3 objectives:

  1. Develop a quality of life measure for carers of people with dementia (Carer-QoL)
  2. Test key assumptions embedded in the current approach to measuring the benefits of healthcare interventions and
  3. 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.