Care at the end of life

: measuring outcomes for young people and their families for use in economic evaluation

Abstract

This thesis reports work to assess outcomes at the end of life (EOL) for young people. The work was conducted in response to a need to capture wider outcomes, for young people at the EOL and close persons, that is their family and friends, for the economic evaluation of interventions at the EOL.
The first part of the work focused on outcomes for young people at the EOL where there is lack of appropriate measures for use in economic evaluation. Twenty-one in depth interviews with young people, parents and bereaved family members were undertaken. Constant comparison was used to identify attributes for a measure. The attributes are: Experience and enjoy, Independence, Freedom from physical and emotional suffering, Formal care and support, Control and Identity.
The second part focused on outcomes for close persons and explored use of a close person measure in this context. Nine cognitive interviews with bereaved family members were undertaken for an initial assessment of the measure. Although completion errors were identified, the measure appears to be relevant for use in this context.
The final part focused on the integration of outcomes for young people and close persons within an economic evaluation. A survey was used to explore relative weights given by the general population (n=566) to outcomes between close persons and young people of different age groups and at different time points in the last year of life. Mean weights were similar across tasks, at around 45% of weight given to close persons. Weights given to close persons increased as the trajectory got closer to death. Higher mean weights elicited for close persons were associated with socio-demographic and care related characteristics of the sample.
This work significantly enhances the assessment of outcomes for young people and close persons in economic evaluation of interventions at the EOL.

Date of Award	7 May 2024
Original language	English
Awarding Institution	University of Bristol
Supervisor	Joanna Coast (Supervisor), Samantha K Husbands (Supervisor), Paul M Mitchell (Supervisor) & Susan Neilson (Supervisor)