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The University of Southampton
Health Sciences

The role of Faculty researchers in developing the first national End of Life Care Survey

Professor Julia Addington-Hall and Dr Katherine Hunt have played a central role in the development of the first national End of Life Care Survey in England, which will be conducted by the Office of National Statistics this autumn, with the findings available to the public in Spring 2012.

This survey arises from the Department of Health (DH) End of Life Care Strategy in 2008, which placed a new emphasis on the quality of care provided at the end of life, and recognised the importance of being able to measure the experiences of people at this time, in order to detect changes over time and differences between services. Without this information it will be difficult to know whether the End of Life Care Strategy leds to improvements in care, or to hold individual Trusts or GP consortia responsible for the care they provide. There was particular interest in trying to measure the views of people who die from all conditions, at all ages and in all settings, not only those who are recognised as dying whilst still well enough to participate in interviews (although this too is important, and something the Faculty has expertise in). The Strategy identified VOICES as a potential method of measuring end of life care experiences. This is a questionnaire about bereaved relatives’ perception of the quality of care received in the last months of life initially developed by Professor Julia Addington-Hall in 1995. It has already been used widely in the UK and internationally. It is primarily an epidemiology tool and is usually used in conjunction with a random sample of deaths drawn from death certificates.

Before using VOICES in a national survey, the DH commissioned Julia Addington-Hall and Katherine Hunt to test out the feasibility of using it in this way, and to amend the questionnaire to bring it in line with the DH Strategy. They were joined in the IMPROVE study by Dr Natalie Shlomo from Social Sciences who provided expertise in survey sampling, weighting and analysis.

The official report from the IMPROVE study was released on the DH website in August 2011, together with a toolkit for Trusts and PCTs wanting to carry out their own VOICES surveys. Interest in both has been high. The study resulted in the development of VOICES-DH, re-designed and shortened to ensure a close fit with the DH Strategy, following discussion groups with user representatives and specialist palliative care staff, and analysis of existing VOICES datasets. It also tested the most appropriate methods for recruitment, sampling, increasing participation and support for participants, as well as considering ethical issues and using online methods for the first time. It attempted to increase minority group participation but concluded other methods were needed to gather experiences of members of these groups. Importantly, the findings confirmed that VOICES is acceptable to recipients, and that it is able to detect differences in reported experience of patients in different PCTs, and between that of patients who died of different conditions.

On the basis of these findings, the DH have decided to use VOICES-DH in their first national survey of end of life care, and to base its methods on the recommendations made by Julia Addington-Hall and Katherine Hunt, who have joined the Steering Group for the project. In addition, the survey will inform the introduction of a new indicator for end of life care for Domain 4 of the NHS Outcomes Framework.

The IMPROVE project team are now writing up papers from the project, and deciding how best to respond to high levels of interest in the report.

You can access the full report here.

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