TY - JOUR T1 - Planning the first national end of life care survey JF - BMJ Supportive & Palliative Care JO - BMJ Support Palliat Care SP - A8 LP - A8 DO - 10.1136/bmjspcare-2012-000196.22 VL - 2 IS - Suppl 1 AU - Katherine Hunt AU - Natalie Shlomo AU - Julia Addington-Hall Y1 - 2012/03/01 UR - http://spcare.bmj.com/content/2/Suppl_1/A8.1.abstract N2 - 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. ER -