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ABSTRACTBackgroundAnalyses of inpatient care admissions have shown that population ageing does not lead to an increase in future healthcare expenditure to the extent that might be expected and that remaining time to death (TTD) is an equally important cost element. But as people live longer and the onset of disease and death are postponed to older ages the utilisation of social care services is another major cost component for elderly people, in particular those with chronic diseases. However, there is a distinct lack of social care data in Scotland to estimate the impact of population ageing and TTD on social care expenditure.
ObjectivesThis study aims to estimate the utilisation and associated costs of inpatient and home care services among end-of-life patients. It will also determine the feasibility of undertaking the linkage of home care service utilisation data, inpatient care episodes and death records.
MethodsNHS Greater Glasgow and Clyde (NHSGGC) social home care data (Cordia), Scottish Morbidity Records (SMR01) and death records (National Records for Scotland, NRS) will be utilised in order to estimate utilisation and costs for home care services and inpatient care at the end of life. The 'Cordia' data is available for the period September 2013 to November 2013 and includes information on the type, duration and frequency of home care services utilised. Costs will be assigned using 'Personal Social Services Research Unit' (PSSRU) costs. Using multilevel modelling techniques the association between TTD, age, demographic and socio-economic measures and expenditure on home care services will be estimated, while allowing the effect of covariates to vary over hierarchical levels, such as episode of care and the patient.
Expected OutcomesThe wider literature suggests that contrary to inpatient care, costs at the end of life for the oldest old might be higher when considering elements of social care provision. The 'Cordia' data consists of 7,367 individuals with 1,620 observed deaths. Further results are forthcoming and findings will significantly add to the knowledge base in the area of population ageing and related health- and social care expenditure. This is a novel linkage and given the difficulties in obtaining social care data, this study will i) help to evaluate the feasibility of using these data for research, and ii) identify where costs at the end of life occur, thus facilitating more targeted approaches to end-of-life care.

UK care home residents are invisible in national datasets. The COVID-19 pandemic has exposed data failings that have hindered service development and research for years. Fundamental gaps, in terms of population and service demographics coupled with difficulties identifying the population in routine data are a significant limitation. These challenges are a key factor underpinning the failure to provide timely and responsive policy decisions to support care homes.
In this commentary we propose changes that could address this data gap, priorities include: (1) Reliable identification of care home residents and their tenure; (2) Common identifiers to facilitate linkage between data sources from different sectors; (3) Individual-level, anonymised data inclusive of mortality irrespective of where death occurs; (4) Investment in capacity for large-scale, anonymised linked data analysis within social care working in partnership with academics; (5) Recognition of the need for collaborative working to use novel data sources, working to understand their meaning and ensure correct interpretation; (6) Better integration of information governance, enabling safe access for legitimate analyses from all relevant sectors; (7) A core national dataset for care homes developed in collaboration with key stakeholders to support integrated care delivery, service planning, commissioning, policy and research.
Our suggestions are immediately actionable with political will and investment. We should seize this opportunity to capitalise on the spotlight the pandemic has thrown on the vulnerable populations living in care homes to invest in data-informed approaches to support care, evidence-based policy making and research.

Background: Changing population demographics have led to an increasing number of functionally dependent older people who require care and medical treatment. In many countries, government policy aims to shift resources into the community from institutional care settings with the expectation that this will reduce costs and improve the quality of care compared. Objectives: To assess the effects of long-term home or foster home care versus institutional care for functionally dependent older people. Search methods: We searched the Cochrane Central Register of Controlled Trials (CENTRAL) via the Cochrane Library, MEDLINE, Embase, CINAHL, and two trials registers to November 2015. Selection criteria: We included randomised and non-randomised trials, controlled before-after studies and interrupted time series studies complying with the EPOC study design criteria and comparing the effects of long-term home care versus institutional care for functionally dependent older people. Data collection and analysis: Two reviewers independently extracted data and assessed the risk of bias of each included study. We reported the results narratively, as the substantial heterogeneity across studies meant that meta-analysis was not appropriate. Main results: We included 10 studies involving 16,377 participants, all of which were conducted in high income countries. Included studies compared community-based care with institutional care (care homes). The sample size ranged from 98 to 11,803 (median N = 204). There was substantial heterogeneity in the healthcare context, interventions studied, and outcomes assessed. One study was a randomised trial (N = 112); other included studies used designs that had potential for bias, particularly due lack of randomisation, baseline imbalances, and non-blinded outcome assessment. Most studies did not select (or exclude) participants for any specific disease state, with the exception of one study that only included patients if they had a stroke. All studies had methodological limitations, so readers should interpret results with caution. It is uncertain whether long-term home care compared to nursing home care decreases mortality risk (2 studies, N = 314, very-low certainty evidence). Estimates ranged from a nearly three-fold increased risk of mortality in the homecare group (risk ratio (RR) 2.89, 95% confidence interval (CI) 1.57 to 5.32) to a 62% relative reduction (RR 0.38, 95% CI 0.17 to 0.61). We did not pool data due to the high degree of heterogeneity (I2 = 94%). It is uncertain whether the intervention has a beneficial effect on physical function, as the certainty of evidence is very low (5 studies, N = 1295). Two studies reported that participants who received long-term home care had improved activities of daily living compared to those in a nursing home, whereas a third study reported that all participants performed equally on physical function. It is uncertain whether long-term home care improves happiness compared to nursing home care (RR 1.97, 95% CI 1.27 to 3.04) or general satisfaction because the certainty of evidence was very low (2 studies, N = 114). The extent to which long-term home care was associated to more or fewer adverse health outcomes than nursing home care was not reported. It is uncertain whether long-term home care compared to nursing home care decreases the risk of hospital admission (very low-certainty evidence, N = 14,853). RR estimates ranged from 2.75 (95% CI 2.59 to 2.92), showing an increased risk for those receiving care at home, to 0.82 (95% CI 0.72 to 0.93), showing a slightly reduced risk for the same group. We did not pool data due to the high degree of heterogeneity (I2 = 99%). Authors' conclusions: There are insufficient high-quality published data to support any particular model of care for functionally dependent older people. Community-based care was not consistently beneficial across all the included studies; there were some data suggesting that community-based care may be associated with improved quality of life and physical function compared to institutional care. However, community alternatives to institutional care may be associated with increased risk of hospitalisation. Future studies should assess healthcare utilisation, perform economic analysis, and consider caregiver burden.

BACKGROUND: Changing population demographics have led to an increasing number of functionally dependent older people who require care and medical treatment. In many countries, government policy aims to shift resources into the community from institutional care settings with the expectation that this will reduce costs and improve the quality of care compared. OBJECTIVES: To assess the effects of long‐term home or foster home care versus institutional care for functionally dependent older people. SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL) via the Cochrane Library, MEDLINE, Embase, CINAHL, and two trials registers to November 2015. SELECTION CRITERIA: We included randomised and non‐randomised trials, controlled before‐after studies and interrupted time series studies complying with the EPOC study design criteria and comparing the effects of long‐term home care versus institutional care for functionally dependent older people. DATA COLLECTION AND ANALYSIS: Two reviewers independently extracted data and assessed the risk of bias of each included study. We reported the results narratively, as the substantial heterogeneity across studies meant that meta‐analysis was not appropriate. MAIN RESULTS: We included 10 studies involving 16,377 participants, all of which were conducted in high income countries. Included studies compared community‐based care with institutional care (care homes). The sample size ranged from 98 to 11,803 (median N = 204). There was substantial heterogeneity in the healthcare context, interventions studied, and outcomes assessed. One study was a randomised trial (N = 112); other included studies used designs that had potential for bias, particularly due lack of randomisation, baseline imbalances, and non‐blinded outcome assessment. Most studies did not select (or exclude) participants for any specific disease state, with the exception of one study that only included patients if they had a stroke. All studies had methodological limitations, so readers ...

Funding: Brain Health Scotland, who are overseeing the development of Brain Health Services within NHS Scotland, are funded through a grant from the Scottish Government. Brain Health Scotland is hosted legally within Alzheimer Scotland who received this grant ; Peer reviewed ; Publisher PDF