Planning the first national end of life care survey

Hunt, Katherine J., Shlomo, Natalie and Addington-Hall, J.M. (2012) Planning the first national end of life care survey. The 9th Palliative Care Congress, Gateshead, United Kingdom. 14 - 16 Mar 2012. (doi:10.1136/bmjspcare-2012-000196.22).

Abstract

Background: The End of Life Care Strategy highlighted a need to evaluate care experiences by accessing the views of those who use end of life care services. The Strategy identified the Views of Informal Carers – Evaluation of Services (VOICES) questionnaire, which is completed by bereaved relatives, as a potential method of evaluating these experiences. The DH commissioned this study to explore the feasibility of a national VOICES survey.

Aims: To develop the most appropriate methods for a national end of life care survey by considering recruitment, sampling, online methods, ethics, increasing participation and support for participants.

Methods: VOICES was re-designed following user/professional discussion groups and analysis of existing VOICES datasets. 1422 deaths registered in two PCTs were identified by the Office of National Statistics using stratified sampling methods. Coroner-registered deaths were excluded. Deaths were assigned to one of two trial groups to determine the most appropriate recruitment approach (opt-in vs opt-out). Online completion was offered to all informants. Local organisations representing minority ethnic groups collaborated in publicising the survey, interpreting services were provided and advertising posters were translated into five languages. A series of support structures was initiated.

Results: Response rate was 33% and response was significantly higher in the ‘opt-out’ trial group (40%, p<0.001). There were no complaints in either group: only two informants called the support line. 19% of responders completed online. Minority group responses were low. As planned, data weighting was used to account for non-response bias. Excluded coroner-registered deaths were significantly different to included deaths on a series of parameters.

Conclusions: The opt-out method is the recommended recruitment approach. Experiences of minority groups should be gathered using alternative methods. Coroner-registered deaths should be included and data should be weighted. VOICES detected differences between PCTs. It will be used in 2011/2012 together with these methods in the first national end of life care survey.

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Contributors

Author: Katherine J. Hunt

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