We advised the WP6 team in Sweden on the design of the pilot trial of the “Living life and doing things together” self-management course. Mark Hann has been helping with the preparation of the IRAS documentation required to obtain ethical approval. A favourable opinion was given in September 2017. He has also been supporting Reena Lasrado (in Manchester) and Therese Bielsten (in Sweden) in their writing of a peer-reviewed manuscript of the trial protocol and their preparations for data collection and, eventually, entry.
The Statistics team is leading on the quantitative aspects of WP5:
- We have obtained the detailed National Audit of Dementia (NAD) data for 2010, 2012 and 2016 on the provisions made for patients with dementia at all Acute hospitals in England and Wales. From the questionnaire items Mark Hann has developed scales of “dementia friendliness” (DF) for each Acute hospital, including a total score plus scores on three subdomains of dementia care (Governance, Patient Outcomes and Training).
- After a very long and complicated process of negotiation with NHS Digital and various potential data hosting systems, we finally received our Hospital Episode Statistics (HES) dataset in July 2017. Since then, Fiona Holland has been engaged in the Herculaneum task of getting this vast dataset of several million records into the form required for our analysis. This has included identifying and matching hospitals across 2010, 2012 and 2016, both with themselves (not easy as IDs change and hospitals merge!) and with their NADS returns (not easy as NADS use their own IDs, necessitating manual matching by Hospital name!); determining the patients with and without a diagnosis of dementia; and constructing the measures of hospital outcomes, including (i) length of stay, (ii) emergency re-admission, (iii) death in hospital, (iv) hospital acquired conditions. The end of this task is now in sight, and we will soon begin the statistical analysis of the outcome measures in earnest.
- We have been closely involved in the planning of the N&D Study’s own national hospital survey on the extent and types of staff dementia training provided. The returns of this survey are now coming in and the statistics team will be heavily involved in their analysis and then combining them with the NADS and HES datasets for further analysis.
- We 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.
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.