Strand 2: Developing a proxy version of ASCOT

While the mixed-methods approach used in care homes (see Strand 3 below) shows considerable potential, it is resource-intensive. A proxy version, to be used alongside self-completion methods, is a lower-cost alternative.

Several quality of life tools have been developed for proxy completion. The developers of these tools all make clear that proxy versions gather a different perspective, so are limited in how accurately they represent the perspective of the service user. When we refer to proxy we include anyone who would be able to comment on the views and experiences of the service user, which could include family, relatives, friends and care workers. While it is clear that we cannot hope the proxy will give a true reflection of the service user’s views of their quality of life, we can develop the tool in such a way that biases in reporting quality and outcomes by proxies are minimised.

In light of this, several issues seem important to consider when developing a proxy version of the tool.

To address these questions we propose:

1. Focus groups with carers (formal and informal) looking after people who would be unable to respond to an interview to explore the relevance of the instrument domains and how questions for the domains could be phrased
2. Development of proxy questionnaire and internal assessment
3. Initial piloting and cognitive testing of proxy questionnaire

The intention would be to develop an instrument that could be self-completed by the proxy, but that could be used in an interview. However, we would explore the feasibility of proxy ratings for the ‘expected’ level of social care-related quality of life in the absence of services to facilitate the measurement of ‘value added’ or SCRQoL gain. Such questions would only be feasible to include in interview.