Planning the first English end of life care survey

Hunt, Katherine J., Shlomo, Natalie and Addington-Hall, J. (2012) Planning the first English end of life care survey. 7th World Research Congress of the European Association of Palliative Care, Trondheim, Norway. 07 - 09 Jun 2012.

Abstract

Aim
The 2008 English End of Life Care (EOLC) Strategy recognised the importance of evaluating EOLC experiences, and recommended an annual EOLC survey to measure the Strategy’s impact and to provide comparative data to local commissioners and providers. The VOICES questionnaire, completed by bereaved relatives, was recommended for use. The Department of Health commissioned this pilot study to test methods for the national survey.

Methods
VOICES’ content was refined to match the EOLC pathway, following discussion with user representatives, palliative care staff, and analysis of existing VOICES datasets (VOICES-SF). The Office for National Statistics identified 1422 deaths registered in 2 health districts using stratified sampling. Coroner-registered deaths were excluded. Deaths were randomly assigned to one of 2 trial groups to determine recruitment approach (opt-in vs opt-out). Online completion was available. Organisations for minority ethnic groups collaborated in publicising the survey, interpreting services were provided and advertising posters were translated into 5 languages. Bereavement support structures were initiated.

Results
Response rate was 33%, and was higher in the ‘opt out’ group (40%, 26%, p< .001). There were no complaints and only 2 informants called the bereavement support line. 19.6% completed online. Minority group response was low. Non-response bias necessitated data weighting. Excluded coroner-registered deaths were significantly different to included deaths on a series of parameters. Statistically significant differences were detected between disease groups and health districts.

Conclusion
Based on these results, VOICES-SF was used in the first English EOLC survey in 2011.The methods, sample size and analysis of the national survey were determined by pilot findings. Coroner-registered deaths were included for the first time. The national survey’s findings will help ensure patient and carer experiences are at the centre of EOLC in England.

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Contributors

Author: Katherine J. Hunt

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