Reporting of clinically diagnosed dementia on death certificates:retrospective cohort study

Background: mortality statistics are a frequently used source of information on deaths in dementia but are limited by concerns over accuracy. Objective: to investigate the frequency with which clinically diagnosed dementia is recorded on death certificates, including predictive factors. Methods: a retrospective cohort study assembled using a large mental healthcare database in South London, linked to Office for National Statistics mortality data. People with a clinical diagnosis of dementia, aged 65 or older, who died between 2006 and 2013 were included. The main outcome was death certificate recording of dementia. Results: in total, 7,115 people were identified. Dementia was recorded on 3,815 (53.6%) death certificates. Frequency of dementia recording increased from 39.9% (2006) to 63.0% (2013) (odds ratio (OR) per year increment 1.11, 95% CI 1.07–1.15). Recording of dementia was more likely if people were older (OR per year increment 1.02, 95% CI 1.01–1.03), and for those who died in care homes (OR 1.89, 95% CI 1.50–2.40) or hospitals (OR 1.14, 95% CI 1.03–1.46) compared with home, and less likely for people with less severe cognitive impairment (OR 0.95, 95% CI 0.94–0.96), and if the diagnosis was Lewy body (OR 0.30, 95% CI 0.15–0.62) or vascular dementia (OR 0.79, 95% CI 0.68–0.93) compared with Alzheimer's disease. Conclusions: changes in certification practices may have contributed to the rise in recorded prevalence of dementia from mortality data. However, mortality data still considerably underestimate the population burden of dementia. Potential biases affecting recording of dementia need to be taken into account when interpreting mortality data

Reversal of English trend towards hospital death in dementia:a population-based study of place of death and associated individual and regional factors, 2001-2010

BACKGROUND: England has one of the highest rates of hospital death in dementia in Europe. How this has changed over time is unknown. This study aimed to analyse temporal trends in place of death in dementia over a recent ten year period. METHODS: Population-based study linking Office for National Statistics mortality data with regional variables, in England 2001–2010. Participants were adults aged over 60 with a death certificate mention of dementia. Multivariable Poisson regression was used to determine the proportion ratio (PR) for death in care home (1) and home/hospice (1) compared to hospital (0). Explanatory variables included individual factors (age, gender, marital status, underlying cause of death), and regional variables derived at area level (deprivation, care home bed provision, urbanisation). RESULTS: 388,899 deaths were included. Most people died in care homes (55.3%) or hospitals (39.6%). A pattern of increasing hospital deaths reversed in 2006, with a subsequent decrease in hospital deaths (−0.93% per year, 95% CI −1.08 to −0.79 p < 0.001), and an increase in care home deaths (0.60% per year, 95% CI 0.45 to 0.75 p < 0.001). Care home death was more likely with older age (PR 1.11, 1.10 to 1.13), and in areas with greater care home bed provision (PR 1.82, 1.79 to 1.85) and affluence (PR 1.29, 1.26 to 1.31). Few patients died at home (4.8%) or hospice (0.3%). Home/hospice death was more likely in affluent areas (PR 1.23, 1.18 to 1.29), for women (PR 1.61, 1.56 to 1.65), and for those with cancer as underlying cause of death (PR 1.84, 1.77 to 1.91), and less likely in the unmarried (PRs 0.51 to 0.66). CONCLUSIONS: Two in five people with dementia die in hospital. However, the trend towards increasing hospital deaths has reversed, and care home bed provision is key to sustain this. Home and hospice deaths are rare. Initiatives which aim to support the end of life preferences for people with dementia should be investigated

Quality indicators for dementia and older people nearing the end of life: A systematic review

Background: Robust quality indicators (QIs) are essential for monitoring and improving the quality of care and learning from good practice. We aimed to identify and assess QIs for the care of older people and people with dementia who are nearing the end of life and recommend QIs for use with routinely collected electronic data across care settings. // Methods: A systematic review was conducted, including five databases and reference chaining. Studies describing the development of QIs for care of older people and those with dementia nearing the end of life were included. QIs were categorized as relating to processes or outcomes, and mapped against six care domains. The psychometric properties (acceptability, evidence base, definition, feasibility, reliability, and validity) of each QI were assessed; QIs were categorized as robust, moderate, or poor. // Results: From 12,980 titles and abstracts screened, 37 papers and 976 QIs were included. Process and outcome QIs accounted for 780 (79.7%) and 196 (20.3%) of all QIs, respectively. Many of the QIs concerned physical aspects of care (n = 492, 50.4%), and very few concerned spiritual and cultural aspects of care (n = 19, 1.9%). Three hundred and fifteen (32.3%) QIs were robust and of those 220 were measurable using routinely collected electronic data. The final shortlist of 71 QIs came from seven studies. // Conclusions: Of the numerous QIs developed for care of older adults and those with dementia nearing the end of life, most had poor or moderate psychometric properties or were not designed for use with routinely collected electronic datasets. Infrastructure for data availability, combined with use of robust QIs, is important for enhancing understanding of care provided to this population, identifying unmet needs, and improving service provision

The future of mammary stem cell biology: the power of in vivo transplants

The recent review by Smith and Medina [1] of in vivo transplantation models and their role in investigating mammary stem cell (MaSC) biology provides comprehensive coverage of the history and complexity of the ‘gold standard ’ MaSC assay in mice. This includes a description of the pioneering studies that showed that mammary epithelial outgrowths can be generated in cleared mammary fat pads transplanted with explants or admixtures of mammary cells [2]. However, this approach clearly does not lend itself to prospective analysis of isolated subpopulations in order to identify which cells possess in vivo regenerative activity. More recently, success in obtaining complex mammary gland structures from transplanted suspensions of single cells has now made this possible [3-7]. Moreover, the regenerated structures have been shown to contain daughter cells with the same in viv

Factors associated with transition from community settings to hospital as place of death for adults aged 75 years or older: a population-based mortality follow-back survey

Objective: To identify factors associated with end of life (EoL) transition from usual place of care to hospital as place of death for people aged 75 years or older (75+). Design: Population-based mortality follow-back survey. Setting: Deaths over six months in 2012 in two unitary authorities in England, covering 800 square miles with over one million residents. Participants: A random sample of people aged 75+ who died in a care home or hospital and all those who died at home or in a hospice unit. Cases were identified from death registrations. The person who registered the death (a relative for 98.9%) completed the survey. Measurements: Our main outcome was EoL transition to hospital as place of death versus no EoL transition to hospital. We used multivariable modified Poisson regression to examine factors (illness, demographic and environmental) related to EoL transition to hospital. Results: 443/882 (50.2%) responded, describing the care received by people who died from mostly non-malignant conditions (76.3%) at mean age 87.4 years (SD= 6.4). 32.3% transitioned to hospital and died there (n=146). Transition was more likely in respiratory disease compared to cancer (Prevalence Ratio [PR] =2.07, 95%CI 1.42- 3.01) and for people with severe breathlessness (PR=1.96, 95%CI 1.12-3.43). Transition was less likely if EoL preferences had been discussed with a healthcare professional (PR=0.60, 95%CI 0.42-0.88) and when there was a key healthcare professional (PR=0.74, 95%CI 0.58-0.95). Conclusion: To reduce EoL transition to hospital for older people this study suggests a need to improve the symptom management of breathlessness in the community and better access to a key healthcare professional skilled in coordinating care, communication, facilitating complex discussions and in planning for future care

Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis [version 2; peer review: 2 approved]

Background: In England, Integrated Care Systems have been established to improve integration of care, as part of the NHS Long Term Plan. For people near the end of life, palliative care can improve integration of care. We aimed to understand whether and how palliative and end of life care was included in Integrated Care System strategies, and to consider priorities for strengthening this.Methods: Documentary analysis of Integrated Care System (ICS) strategies, using summative content analysis, was performed. Google searches were used to identify NHS Trust, Clinical Commissioning Group or ICS websites. We searched these websites to identify strategies. Key terms were used to identify relevant content. Themes were mapped onto an adapted logic model for integrated care.Results: 23 Integrated Care System strategy documents were identified. Of these, two did not mention any of the key terms, and six highlighted palliative and end of life care as either a priority, area of focus, or an ambition. While most (19/23) strategies included elements that could be mapped onto the adapted logic model for integrated care, the thread from enablers and components, to structures, processes, outcomes, and impact was incomplete.Conclusions: Greater prioritisation of palliative and end of life care within recently established Integrated Care Systems could improve outcomes for people near the end of life, as well as reduce reliance on acute hospital care. Integrated Care Systems should consider involving patients, the public and palliative care stakeholders in the ongoing development of strategies. For strategies to be effective, our adapted logic model can be used to outline how different components of care fit together to achieve defined outcomes and impact

Factors associated with older people's emergency department attendance towards the end of life: a systematic review.

BACKGROUND: Emergency department (ED) attendance for older people towards the end of life is common and increasing, despite most preferring home-based care. We aimed to review the factors associated with older people's ED attendance towards the end of life. METHODS: Systematic review using Medline, Embase, PsychINFO, CINAHL and Web of Science from inception to March 2017. Included studies quantitatively examined factors associated with ED attendance for people aged ≥65 years within the last year of life. We assessed study quality using the QualSyst tool and determined evidence strength based on quality, quantity and consistency. We narratively synthesized the quantitative findings. RESULTS: Of 3824 publications identified, 21 were included, combining data from 1 565 187 participants. 17/21 studies were from the USA and 19/21 used routinely collected data. We identified 47 factors and 21 were included in the final model. We found high strength evidence for associations between ED attendance and palliative/hospice care (adjusted effect estimate range: 0.1-0.94); non-white ethnicity (1.03-2.16); male gender (1.04-1.83, except 0.70 in one sub-sample) and rural areas (0.98-1.79). The final model included socio-demographic, illness and service factors, with largest effect sizes for service factors. CONCLUSIONS: In this synthesis, receiving palliative care was associated with lower ED attendance in the last year of life for older adults. This has implications for service models for older people nearing the end of life. However, there is limited evidence from European countries and none from low or middle-income countries, which warrants further research.This work is independent research funded by Cicely Saunders International and The Atlantic Philanthropies (grant number 24610). The sponsor had no role in the design, methods, subject recruitment, data collection, analysis or preparation of this paper. This research was supported by the Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South London, which is part of the National Institute for Health Research (NIHR), and is a partnership between King’s Health Partners, St. George’s, University London, and St George’s Healthcare NHS Trust. C.J.E. holds a HEE/NIHR Senior Clinical Lectureship and I.J.H. is an Emeritus NIHR Senior Investigator. B.G.’s contribution was supported by the Calouste Gulbenkian Foundation

Developing a model of short-term integrated palliative and supportive care for frail older people in community settings: perspectives of older people, carers and other key stakeholders

Background: Understanding how best to provide palliative care for frail older people with non-malignant conditions is an international priority. We aimed to develop a community-based episodic model of short-term integrated palliative and supportive care (SIPS) based on the views of service users and other key stakeholders in the United Kingdom. Method: Transparent expert consultations with health professionals, voluntary sector and carer representatives including a consensus survey; and focus groups with older people and carers were used to generate recommendations for the SIPS model. Discussions focused on three key components of the model: potential benefit of SIPS; timing of delivery; and processes of integrated working between specialist palliative care and generalist practitioners. Content and descriptive analysis was employed and findings integrated across the data sources. Findings: We conducted two expert consultations (n=63), a consensus survey (n=42) and three focus groups (n=17). Potential benefits of SIPS included holistic assessment, opportunity for end of life discussion, symptom management, and carer reassurance. Older people and carers advocated early access to SIPS, while other stakeholders proposed delivery based on complex symptom burden. A priority for integrated working was the assignment of a key worker to coordinate care, but the assignment criteria remain uncertain. Interpretation: Key stakeholders agree that a model of SIPS for frail older people with non-malignant conditions has potential benefits within community settings, but differ in opinion on the optimal timing and indications for this service. Our findings highlight the importance of consulting all key stakeholders in model development prior to feasibility evaluation

Changes in mortality patterns and place of death during the COVID-19 pandemic:A descriptive analysis of mortality data across four nations

Background: Understanding patterns of mortality and place of death during the COVID-19 pandemic is important to help provide appropriate services and resources. Aims: To analyse patterns of mortality including place of death in the United Kingdom (UK) (England, Wales, Scotland and Northern Ireland) during the COVID-19 pandemic to date. Design: Descriptive analysis of UK mortality data between March 2020 and March 2021. Weekly number of deaths was described by place of death, using the following definitions: (1) expected deaths: average expected deaths estimated using historical data (2015–19); (2) COVID-19 deaths: where COVID-19 is mentioned on the death certificate; (3) additional non-COVID-19 deaths: above expected but not attributed to COVID-19; (4) baseline deaths: up to and including expected deaths but excluding COVID-19 deaths. Results: During the analysis period, 798,643 deaths were registered in the UK, of which 147,282 were COVID-19 deaths and 17,672 were additional non-COVID-19 deaths. While numbers of people who died in care homes and hospitals increased above expected only during the pandemic waves, the numbers of people who died at home remained above expected both during and between the pandemic waves, with an overall increase of 41%. Conclusions: Where people died changed during the COVID-19 pandemic, with an increase in deaths at home during and between pandemic waves. This has implications for planning and organisation of palliative care and community services. The extent to which these changes will persist longer term remains unclear. Further research could investigate whether this is reflected in other countries with high COVID-19 mortality