Measuring informal carer quality of life in economic evaluation

McLoughlin, Carol (2023). Measuring informal carer quality of life in economic evaluation. University of Birmingham. Ph.D.

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Abstract

Carer quality of life (QoL) is recommended for inclusion in economic evaluation, but little is known about the relative performance of different QoL measures with informal carers. This thesis investigates, for the first time, the psychometric performance, in terms of validity and responsiveness, of different preference-based measures of carer QoL for different groups of informal carers. The study focuses on one health-related (EQ-5D-5L), one wellbeing (ICECAP-A) and three care-related (CES, CarerQoL-7D, ASCOT-Carer) QoL measures. Construct validity, responsiveness, feasibility, content validity, and face validity were investigated through primary survey work with 573 informal carers of adults with dementia, recovery from stroke, a mental health condition, or rheumatoid arthritis.

A baseline questionnaire containing the five QoL measures was posted to informal carers and a follow-up questionnaire was posted 12 months later to informal carers who responded at baseline. Hypotheses regarding anticipated associations between constructs related to the QoL of informal carers and QoL measures scores were developed and tested to investigate construct validity and responsiveness. Think-aloud and semi-structured interviews with 24 informal carers were carried out and a thematic analysis was conducted to assess the content validity, feasibility, and face validity of each QoL measure.

Taken together, the results of the quantitative and qualitative analyses indicate that each of the five QoL measures can be considered, in general, valid and feasible for use with informal carers in economic evaluation. Where the focus is on health maximisation, the results suggest that the EQ-5D-5L has relatively encouraging validity as an outcome measure with informal carers. However, the results show that when including informal carers in economic evaluation health-related QoL (HRQoL) may be a limiting measurement as it does not capture the full impacts of providing informal care. Where there is more flexibility in the economic evaluation, the findings show that the ICECAP-A and measures of care-related QoL (CRQoL), in particular, the ASCOT-Carer, can be used in addition or instead of a HRQoL measure, in view of their performance.

Type of Work:

Thesis (Doctorates > Ph.D.)

Award Type:

Doctorates > Ph.D.

Supervisor(s):