Understanding the factors that influence why people with dementia make transitions from the community to acute hospital care settings in the last months of life: a retrospective cohort study
Study Code / Acronym
Project U-CareAward Number
CS-2015-15-005Award Type
Clinician Scientist AwardProgramme
Integrated Academic Training ProgrammeStatus / Stage
CompletedDates
1 March 2016 -1 September 2021
Duration (calculated)
05 years 06 monthsFunder(s)
NIHRFunding Amount
£856,245.00Funder/Grant study page
NIHRContracted Centre
King's College LondonContracted Centre Webpage
Principal Investigator
Professor Katherine SleemanPI Contact
katherine.sleeman@kcl.ac.ukPI ORCID
0000-0002-9777-4373WHO Catergories
Models across the continuum of careUnderstanding risk factors
Disease Type
Severe DementiaCPEC Review Info
| Reference ID | 128 |
|---|---|
| Researcher | Reside Team |
| Published | 12/06/2023 |
Data
| Study Code / Acronym | Project U-Care |
|---|---|
| Award Number | CS-2015-15-005 |
| Status / Stage | Completed |
| Start Date | 20160301 |
| End Date | 20210901 |
| Duration (calculated) | 05 years 06 months |
| Funder/Grant study page | NIHR |
| Contracted Centre | King's College London |
| Contracted Centre Webpage | |
| Funding Amount | £856,245.00 |
Abstract
Transition from community settings into hospital is common for people with severe dementia, but can have profoundly deleterious physical and cognitive consequences. The concept of ‘burdensome transitions’ has been introduced to describe potentially harmful transitions between care settings for people with advanced dementia. These are defined as (i) multiple hospitalisations in the last 90 days of life, or (ii) a transition in the last 3 days, or (iii) a lack of continuity between care homes before and after hospitalisation. In the United Kingdom little is known about the frequency of burdensome transitions among people with dementia or the reasons for these, hampering development of effective health policies. Aim To determine the relative individual, illness-related, and environmental factors associated with burdensome transitions for people with dementia in their last year of life, to inform effective public health policies to improve care towards the end of life for this growing population. Methods Study design Retrospective cohort study, with data linkage. Study population People with dementia, aged over 60, who died between 01/01/2001 and 31/12/2013. The population will be identified from the South London and Maudsley NHS Foundation Trust (SLAM) Biomedical Research Centre (BRC) Case Register. Data sources The study will use two levels of routinely collected data: a) Individual level data obtained from three sources: the SLAM BRC Case Register, with individual linkage to Office for National Statistics (ONS) mortality data, and Hospital Episodes Statistics (HES) activity for the 12 months preceding death. b) Area-level data including: information on service provision derived from various sources; socio-economic position derived using the Index of Multiple Deprivation (2010); geographic area mapping to determine proximity of patients’ place of residence to healthcare facilities. Data analysis Primary outcome – The primary outcome will be burdensome transitions. Explanatory variables – Explanatory variables will be based on a theoretical model informed by the work of Gomes and Higginson (2006). This will include individual, illness-related and environmental factors. Descriptive analysis -h; The number of healthcare transitions during the last year of life (including burdensome transitions, out of hours transitions), hospital bed days, Emergency Department admissions, place of residence, and site of death will be described for the total population. Statistical modelling – Statistical modelling will be used to understand how individual-level and area-level factors interact to contribute to burdensome transitions. Poisson regression will be used to determine Proportion Ratios (PR) for burdensome transitions, which will be modelled as a binary variable. Economic analysis – NHS costs for the last year of life will be described for the whole population using estimates from Healthcare Resource Group codes derived from HES and NHS reference costs. The relationship between burdensome transitions and costs will be explored through univariate and multivariate linear regression modelling. The dependent variable will be total NHS costs in the last 90 days, modelled as a continuous variable. Generalised linear models will be used if the data are skewed. All analyses will be done using Stata. Benefits to patients and NHS Dementia is the commonest cause of death for women in the United Kingdom, and improving care for people with dementia as they approach the end of their life is a national priority. Transitions between health care settings for people with dementia are common towards the end of life, but are associated with morbidity and mortality. Reducing the use of hospital-based care in advanced dementia also has potential economic benefits. This study will provide high quality evidence on the factors associated with transition between healthcare settings for people with dementia, and the associated costs, to inform health policies that aim to improve care for this growing population.
Aims
To determine the relative individual, illness-related, and environmental factors associated with burdensome transitions for people with dementia in their last year of life, to inform effective public health policies to improve care towards the end of life for this growing population.