Our contribution to WP3 is focused on supporting the Delphi exercise and helping assess the psychometric properties of the various candidate instruments for measuring outcomes. For the Delphi, we have advised on the statistical aspects of the survey, including developing a randomisation scheme to reduce respondent burden for people with dementia, created software code to produce informative tabular and graphical summaries of the round 1 survey results for use in Round 2, and, most recently, produced Round 2 summaries to feed into the consensus meeting to select the core outcomes.
With regard to outcome measures, the WP3 team are extracting the available evidence from research papers and reports on how each measure performs in various important respects. These include acceptability to people with dementia and their carers, statistical validity and reliability, and the ability to discriminate between people at different levels of the outcome. The Statistics team are supporting the summarising, combining and interpretation of the available evidence, for the purpose of deciding on the final selection of instruments for the core outcome set.
Work Programme 6 (Living life and doing things together). We have had initial discussions with the WP6 team in Sweden on the design of the pilot trial of the “Living life and doing things together” self-management course.
Work Programme 5 (Developing the evidence base for evaluating dementia training in NHS hospitals). The Statistics team is leading on the quantitative aspects of WP5:
- We have obtained the detailed 2012 National Audit of Dementia (NAD) data on the provisions made for patients with dementia at all Acute hospitals in England and Wales. From this we have constructed “dementia friendliness” (DF) scores for each Acute hospital, including a total score plus scores on 9 subdomains of dementia care.
- We have been developing up a submission for Hospital Episode Statistics data, from which we will construct measures of hospital outcomes for people with dementia, including (i) record of dementia for current admission; (ii) length of stay; (iii) emergency re-admissions; (iv) deaths in hospital.
- We have been planning the N&D Study’s own national hospital survey on the extent and types of staff dementia training provided.
- Based on the DF scores we constructed from the NADS 2012 survey data, we have developed a sampling frame for selecting 24 hospitals for an in-depth survey of staff on the dementia training received and their knowledge/confidence in dementia, contrasting hospitals high versus low on training.