End-of-life care costs and place of death across health and social care sectors.

OBJECTIVES: This study explores the relationship between end-of-life care costs and place of death across different health and social care sectors. METHODS: We used a linked local government and health data of East London residents (n=4661) aged 50 or over, deceased between 2016 and 2020. Individuals who died in hospital were matched to those who died elsewhere according to a wide range of demographic, socioeconomic and health factors. We reported mean healthcare costs and 95% CIs by care sectors over the 12-month period before death. Subgroup analyses were conducted to investigate if the role of place of death differs according to long-term conditions and age. RESULTS: We found that mean difference in total cost between hospital and non-hospital decedents was £4565 (95% CI £3132 to £6046). Hospital decedents were associated with higher hospital cost (£5196, £4499 to £5905), higher mental healthcare cost (£283, £78 to £892) and lower social care cost (-£838, -£1,209 to -£472), compared with individuals who died elsewhere. Subgroup analysis shows that the association between place of death and healthcare costs differs by age and long-term conditions, including cancer, mental health and cardiovascular diseases. CONCLUSION: This study suggests that trajectories of end-of-life healthcare costs vary by place of death in a differential way across health and social care sectors. High hospital burden for cancer patients may be alleviated by strengthening healthcare provision in less cost-intensive settings, such as community and social care.

Tackling barriers to COVID-19 vaccine uptake in London: a mixed-methods evaluation.

BACKGROUND: In response to the COVID-19 pandemic, the first vaccine was administered in December 2020 in England. However, vaccination uptake has historically been lower in London than in other English regions. METHODS: Mixed-methods: This comprised an analysis of cumulative percentage uptake across London between 8 December 2020 and 6 June 2021 by vaccine priority cohorts and ethnicity. We also undertook thematic analyses of uptake barriers, interventions to tackle these and key learning from a qualitative survey of 27 London local authority representatives, vaccine plans from London's five Integrated Care Systems and interviews with 38 London system representatives. RESULTS: Vaccine uptake was lower in Black ethnic (57-65% uptake) compared with the White British group (90% uptake). Trust was a critical issue, including mistrust in the vaccine itself and in authorities administering or promoting it. The balance between putative costs and benefits of vaccination created uptake barriers for zero-hour and shift workers. Intensive, targeted and 'hyper-local' initiatives, which sustained community relationships and were not constrained by administrative boundaries, helped tackle these barriers. CONCLUSIONS: The success of the national vaccination programme depended on conceding local autonomy, investing in responsive and long-term partnerships to engender trust through in-depth understanding of communities' beliefs.

Kailo: a systemic approach to addressing the social determinants of young people's mental health and wellbeing at the local level.

The mental health and wellbeing of children and young people is deteriorating. It is increasingly recognised that mental health is a systemic issue, with a wide range of contributing and interacting factors. However, the vast majority of attention and resources are focused on the identification and treatment of mental health disorders, with relatively scant attention on the social determinants of mental health and wellbeing and investment in preventative approaches. Furthermore, there is little attention on how the social determinants manifest or may be influenced at the local level, impeding the design of contextually nuanced preventative approaches. This paper describes a major research and design initiative called Kailo that aims to support the design and implementation of local and contextually nuanced preventative strategies to improve children's and young people's mental health and wellbeing. The Kailo Framework involves structured engagement with a wide range of local partners and stakeholders - including young people, community partners, practitioners and local system leaders - to better understand local systemic influences and support programmes of youth-centred and evidence-informed co-design, prototyping and testing. It is hypothesised that integrating different sources of knowledge, experience, insight and evidence will result in better embedded, more sustainable and more impactful strategies that address the social determinants of young people's mental health and wellbeing at the local level.

Conditions associated with the initiation of domiciliary care following a hospital admission: a cohort study in East London, England.

OBJECTIVE: Older people and people with complex needs often require both health and social care services, but there is limited insight into individual journeys across these services. To help inform joint health and social care planning, we aimed to assess the relationship between hospital admissions and domiciliary care receipt. DESIGN: Retrospective cohort study, using linked data on primary care activity, hospital admissions and social care records. SETTING: London Borough of Barking and Dagenham, England. PARTICIPANTS: Adults aged 19 and over who lived in the area on 1 April 2018 and who were registered at a general practice in East London between 1 April 2018 and 31 March 2020 (n=140 987). OUTCOME MEASURES: The outcome was initiation of domiciliary care. We estimated the rate of hospital-associated care package initiation, and of care packages unrelated to hospital admission. We also described the characteristics of hospital admissions that preceded domiciliary care, including primary diagnosis codes. RESULTS: 2041/140 987 (1.4%) participants had a domiciliary care package during a median follow-up of 1.87 years. 32.6% of packages were initiated during a hospital stay or within 7 days of discharge. The rate of new domiciliary care packages was 120 times greater (95% CI 110 to 130) during or after a hospital stay than at other times, and this association was present for all age groups. Primary admission reasons accounting for the largest number of domiciliary care packages were hip fracture, pneumonia, stroke, urinary tract infection, septicaemia and exacerbations of long-term conditions (chronic obstructive pulmonary disease and heart failure). Admission reasons with the greatest likelihood of a subsequent domiciliary care package were fractures and strokes. CONCLUSION: Hospitals are a major referral route into domiciliary care. While patients admitted due to new and acute illnesses account for many domiciliary care packages, exacerbations of long-term conditions and age-related and frailty-related conditions are also important drivers.

Acceptability and Impact of an Educational App (iCare) for Informal Carers Looking After People at Risk of Pressure Ulceration: Mixed Methods Pilot Study.

BACKGROUND: Pressure ulcers are areas of skin damage resulting from sustained pressure. Informal carers play a central role in preventing pressure ulcers among older and disabled people living at home. Studies highlight the paucity of pressure ulcer training for informal carers and suggest that pressure ulcer risk is linked to high levels of carer burden. OBJECTIVE: This pilot study evaluated a smartphone app with a specific focus on pressure ulcer prevention education for informal carers. The app was developed based on the principles of microlearning. The study aimed to explore carer perspectives on the acceptability of the app and determine whether the app increased knowledge and confidence in their caring role. METHODS: In this concurrent mixed methods study, participants completed quantitative questionnaires at baseline and at the end of weeks 2 and 6, which examined caregiving self-efficacy, preparedness for caregiving, caregiver strain, pressure ulcer knowledge, and app acceptability and usability. A subsample of participants participated in a "think aloud" interview in week 1 and semistructured interviews at the end of weeks 2 and 6. RESULTS: Of the 32 participants, 23 (72%) participants completed the week 2 and 16 (50%) completed the week 6 questionnaires; 66% (21/32) of carers participated in qualitative "think aloud" interviews, and 18 (56%) also participated in semistructured interviews at week 2, and 13 (41%) at week 6. Pressure ulcer knowledge scores significantly changed (F1,6.112=21.624; P=.001) from baseline (mean 37.5; SE 2.926) to the second follow-up (mean 59.72, SE 3.985). Regarding the qualitative data, the theme "I'm more careful now and would react to signs of redness" captured participants' reflections on the new knowledge they had acquired, the changes they had made to their caring routines, their increased vigilance for signs of skin damage, and their intentions toward the app going forward. There were no significant results pertaining to improved preparedness for caregiving or caregiving self-efficacy or related to the Caregiver Strain Index. Participants reported above average usability scores on a scale of 0 to 100 (mean 69.94, SD 18.108). The app functionality and information quality were also rated relatively high on a scale of 0 to 5 (mean 3.84, SD 0.704 and mean 4.13, SD 0.452, respectively). Overall, 2 themes pertaining to acceptability and usability were identified: "When you're not used to these things, they take time to get the hang of" and "It's not a fun app but it is informative." All participants (n=32, 100%) liked the microlearning approach. CONCLUSIONS: The iCare app offers a promising way to improve informal carers' pressure ulcer knowledge. However, to better support carers, the findings may reflect the need for future iterations of the app to use more interactive elements and the introduction of gamification and customization based on user preferences.

Variation in health visiting contacts for children in England: cross-sectional analysis of the 2-2½ year review using administrative data (Community Services Dataset, CSDS).

OBJECTIVE: The 2-2½ year universal health visiting review in England is a key time point for assessing child development and promoting school readiness. We aimed to ascertain which children were least likely to receive their 2-2½ year review and whether there were additional non-mandated contacts for children who missed this review. DESIGN, SETTING, PARTICIPANTS: Cross-sectional analysis of the 2-2½ year review and additional health visiting contacts for 181 130 children aged 2 in England 2018/2019, stratified by ethnicity, deprivation, safeguarding vulnerability indicator and Looked After Child status. ANALYSIS: We used data from 33 local authorities submitting highly complete data on health visiting contacts to the Community Services Dataset. We calculated the percentage of children with a recorded 2-2½ year review and/or any additional health visiting contacts and average number of contacts, by child characteristic. RESULTS: The most deprived children were slightly less likely to receive a 2-2½ year review than the least deprived children (72% vs 78%) and Looked After Children much less likely, compared with other children (44% vs 69%). When all additional contacts were included, the pattern was reversed (deprivation) or disappeared (Looked After children). A substantial proportion of all children (24%), children with a 'safeguarding vulnerability' (22%) and Looked After children (29%) did not have a record of either a 2-2½ year review or any other face-to-face contact in the year. CONCLUSIONS: A substantial minority of children aged 2 with known vulnerabilities did not see the health visiting team at all in the year. Some higher need children (eg, deprived and Looked After) appeared to be seeing the health visiting team but not receiving their mandated health review. Further work is needed to establish the reasons for this, and potential solutions. There is an urgent need to improve the quality of national health visiting data.

Understanding health and care expenditure by setting - who matters to whom?

OBJECTIVE: To assess service use and associated expenditure across a range of care settings in one local authority in London, United Kingdom. METHODS: An analysis of linked electronic health and council records of adults living in the borough of Barking and Dagenham, east London, for the financial year 2016/17. Unit costs were applied to individual service use to provide expenditure at an individual and population level for five settings of care. Population and expenditure volumes were compared for 32 possible combinations of service use. RESULTS: The total expenditure for the cohort (114,393 residents) for 2016/17 was £180.1 million. Almost half (47%) of total expenditure was incurred by community care, social care and mental health services, with hospital care and primary care incurring, respectively, 35% (£63.3 m) and 18% (£32.6 m). The two most common combinations in terms of total population volume and expenditure were primary and hospital care, and primary, hospital and community care. Primary care was present in all combinations. Mental health service use accounted for just over a tenth of all expenditure in the borough, but using mental health services substantially increased mean expenditure per patient. CONCLUSIONS: A whole system perspective across all settings of care improves understanding of service user patterns. Setting-level analysis remains important, particularly for mental health users.

Multiple long-term conditions within households and use of health and social care: a retrospective cohort study.

BACKGROUND: The daily management of long-term conditions falls primarily on individuals and informal carers, but the impact of household context on health and social care activity among people with multiple long-term conditions (MLTCs) is understudied. AIM: To test whether co-residence with a person with MLTCs (compared with a co-resident without MLTCs) is associated with utilisation and cost of primary, community, secondary health care, and formal social care. DESIGN & SETTING: Linked data from health providers and local government in Barking and Dagenham for a retrospective cohort of people aged ≥50 years in two-person households in 2016-2018. METHOD: Two-part regression models were applied to estimate annualised use and cost of hospital, primary, community, mental health, and social care by MLTC status of individuals and co-residents, adjusted for age, sex, and deprivation. Applicability at the national level was tested using the Clinical Practice Research Datalink (CPRD). RESULTS: Forty-eight per cent of people with MLTCs in two-person households were co-resident with another person with MLTCs. They were 1.14 (95% confidence interval [CI] = 1.00 to 1.30) times as likely to have community care activity and 1.24 (95% CI = 0.99 to 1.54) times as likely to have mental health care activity compared with those co-resident with a healthy person. They had more primary care visits (8.5 [95% CI = 8.2 to 8.8] versus 7.9 [95% CI = 7.7 to 8.2]) and higher primary care costs. Outpatient care and elective admissions did not differ. Findings in national data were similar. CONCLUSION: Care utilisation for people with MLTCs varies by household context. There may be potential for connecting health and community service input across household members.

Health and social care costs at the end of life: a matched analysis of linked patient records in East London.

BACKGROUND: care in the final year of life accounts for 10% of inpatient hospital costs in UK. However, there has been little analysis of costs in other care settings. We investigated the publicly funded costs associated with the end of life across different health and social care settings. METHOD: we performed cross-sectional analysis of linked electronic health records of residents aged over 50 in a locality in East London, UK, between 2011 and 2017. Those who died during the study period were matched to survivors on age group, sex, deprivation, number of long-term conditions and time period. Mean costs were calculated by care setting, age and months to death. RESULTS: across 8,720 matched patients, the final year of life was associated with £7,450 (95% confidence interval £7,086-£7,842, P < 0.001) of additional health and care costs, 57% of which related to unplanned hospital care. Whilst costs increased sharply over the final few months of life in emergency and inpatient hospital care, in non-acute settings costs were less concentrated in this period. Patients who died at older ages had higher social care costs and lower healthcare costs than younger patients in their final year of life. CONCLUSIONS: the large proportion of costs relating to unplanned hospital care suggests that end-of-life planning could direct care towards more appropriate settings and lead to system efficiencies. Death at older ages results in an increasing proportion of care costs relating to social care than to healthcare, which has implications for an ageing society.

An evaluation of a safety improvement intervention in care homes in England: a participatory qualitative study.

OBJECTIVE: A growing proportion of older people live in care homes and are at high risk of preventable harm. This study describes a participatory qualitative evaluation of a complex safety improvement intervention, comprising training, performance measurement and culture-change elements, on the safety of care provided for residents. DESIGN: A participatory qualitative study. SETTING: Ninety care homes in one geographical locality in southern England. PARTICIPANTS: A purposeful sample of care home managers, front-line staff, residents, quality improvement facilitators and trainers, local government and health service commissioners, and an embedded researcher. MAIN OUTCOME MEASURES: Changes in care home culture and work processes, assessed using documentary analysis, interviews, observations and surveys and analysed using a framework-based thematic approach. RESULTS: Participation in the programme appears to have led to changes in the value that staff place on resident safety and to changes in their working practices, in particular in relation to their desire to proactively manage resident risk and their willingness to use data to examine established practice. The results suggest that there is a high level of commitment among care home staff to address the problem of preventable harm. Mobilisation of this commitment appears to benefit from external facilitation and the introduction of new methods and tools. CONCLUSIONS: An evidence-based approach to reducing preventable harm in care homes, comprising an intervention with both technical and social components, can lead to changes in staff priorities and practices which have the potential to improve outcomes for people who live in care homes.

Standard set of health outcome measures for older persons.

BACKGROUND: The International Consortium for Health Outcomes Measurement (ICHOM) was founded in 2012 to propose consensus-based measurement tools and documentation for different conditions and populations.This article describes how the ICHOM Older Person Working Group followed a consensus-driven modified Delphi technique to develop multiple global outcome measures in older persons. The standard set of outcome measures developed by this group will support the ability of healthcare systems to improve their care pathways and quality of care. An additional benefit will be the opportunity to compare variations in outcomes which encourages and supports learning between different health care systems that drives quality improvement. These outcome measures were not developed for use in research. They are aimed at non researchers in healthcare provision and those who pay for these services. METHODS: A modified Delphi technique utilising a value based healthcare framework was applied by an international panel to arrive at consensus decisions.To inform the panel meetings, information was sought from literature reviews, longitudinal ageing surveys and a focus group. RESULTS: The outcome measures developed and recommended were participation in decision making, autonomy and control, mood and emotional health, loneliness and isolation, pain, activities of daily living, frailty, time spent in hospital, overall survival, carer burden, polypharmacy, falls and place of death mapped to a three tier value based healthcare framework. CONCLUSIONS: The first global health standard set of outcome measures in older persons has been developed to enable health care systems improve the quality of care provided to older persons.

Assessing the safety culture of care homes: a multimethod evaluation of the adaptation, face validity and feasibility of the Manchester Patient Safety Framework.

BACKGROUND: Understanding the cultural characteristics of healthcare organisations is widely recognised to be an important component of patient safety. A growing number of vulnerable older people are living in care homes but little attention has been paid to safety culture in this sector. In this study, we aimed to adapt the Manchester Patient Safety Framework (MaPSaF), a commonly used tool in the health sector, for use in care homes and then to test its face validity and preliminary feasibility as a tool for developing a better understanding of safety culture in the sector. METHODS: As part of a wider improvement programme to reduce the prevalence of common safety incidents among residents in 90 care homes in England, we adapted MaPSaF and carried out a multimethod participatory evaluation of its face validity and feasibility for care home staff. Data were collected using participant observation, interviews, documentary analysis and a survey, and were analysed thematically. RESULTS: MaPSaF required considerable adaptation in terms of its length, language and content in order for it to be perceived to be acceptable and useful to care home staff. The changes made reflected differences between the health and care home sectors in terms of the local context and wider policy environment, and the expectations, capacity and capabilities of the staff. Based on this preliminary study, the adapted tool, renamed 'Culture is Key', appears to have reasonable face validity and, with adequate facilitation, it is usable by front-line staff and useful in raising their awareness about safety issues. CONCLUSIONS: 'Culture is Key' is a new tool which appears to have acceptable face validity and feasibility to be used by care home staff to deepen their understanding of the safety culture of their organisations and therefore has potential to contribute to improving care for vulnerable older people.