A think-aloud study on the feasibility of using the ICECAP-SCM in patients with end stage organ failure and the impact of functional decline on capability wellbeing at the end of life.

Nwankwo, Henry Chibuike (2020). A think-aloud study on the feasibility of using the ICECAP-SCM in patients with end stage organ failure and the impact of functional decline on capability wellbeing at the end of life. University of Birmingham. Ph.D.

Preview

Nwankwo2020PhD_Redacted.pdf
Text - Redacted Version
Available under License All rights reserved.
Download (6MB) | Preview

Abstract

An ageing population and the rising costs associated with end of life care have led to increased scrutiny of the economic decision-making processes at the end of life. Critics argue that the normative framework that underpins the economic evaluation of health care interventions may be inappropriate for evaluating end of life care interventions. A broader evaluative space, that goes beyond health to capture the wider benefits of end of life interventions may provide a more appropriate basis for evaluating end of life care. One option for operationalising this broader evaluative space is the use of the ICECAP-SCM which is a self-complete tool for evaluating health and wellbeing at the end of life. There is, however, little evidence about its use in patients near the end of life.
This thesis reports a PhD study that aimed to determine the feasibility of using the ICECAP-SCM alongside the more traditionally used EQ-5D-5L, and the ICECAP-A in patients with end stage organ failure. The thesis also aims to explore the impact of functional decline on health and broader aspects of wellbeing. This is the first study to investigate how the three tools measure quality of life in end stage organ failure, and explore the impact of decline on wellbeing using the three measures.
A systematic review of the literature showed that there is insufficient evidence on the feasibility of using measures suitable for economic decision making in evaluating end of life care interventions. Qualitative methods such as cognitive interviews were useful in providing a better understanding of the way measures were understood and completed by respondents, and issues that can affect their use.
The feasibility of using the ICECAP-SCM is explored through think-aloud interviews. Sixty patients with end stage heart failure, end stage renal failure and end stage COPD participated in the research. Interview transcripts were examined for errors in comprehension, retrieval, judgement and response. The constant comparative method was used to analyse qualitative data providing an in-depth insight into measure completion. Qualitative thematic analysis further explored the impact of functional decline on health and capability wellbeing.
Error rates were low across all three measures and differences in error rates between the measures were small. The measures were acceptable, clear and easy to complete. The impact of terminal illness on health and capability wellbeing, and the extent to which participants were able to cope and adapt to the effects of their condition varied across the groups.
The ICECCAP-SCM is feasible to use with patients with end stage organ failure receiving care in different settings. Future research should consider exploring the feasibility of using the ICECAP-SCM in patients on other dying trajectories such as the frailty trajectory where patients are likely to receive care in nursing homes. The findings provide an opportunity to researchers and policy makers interested in the use of a measure suitable for economic decision making which captures the wider benefits of end of life interventions and services.

Type of Work:

Thesis (Doctorates > Ph.D.)

Award Type:

Doctorates > Ph.D.

Supervisor(s):