Disability in Basic Activities of Daily Living Is Associated With Symptom Burden in Older People With Advanced Cancer or Chronic Obstructive Pulmonary Disease: A Secondary Data Analysis.

CONTEXT: Managing activities of daily living is important to people with advanced cancer or chronic obstructive pulmonary disease (COPD). Understanding disability in activities of daily living may inform service planning. OBJECTIVE: To identify the prevalence of disability in activities of daily living, associations and change over time, in older people with advanced cancer or COPD. METHODS: Secondary analysis of International Access, Rights and Empowerment (IARE) studies in adults aged ≥65 years with advanced disease in the United Kingdom, Ireland, and United States, using cross-sectional (IARE I & II) and longitudinal (IARE II, 3 timepoints over 6 months) data. Measures included disability in activities of daily living (Barthel Index), symptom severity (Palliative Outcome Scale), and assistive device use (self-reported). Logistic regression was used to identify relationships between disability and age, sex, living alone, diagnosis, and symptom burden; visual graphical analysis explores individual disability trajectories. RESULTS: One hundred fifty-nine participants were included (140 cancer, 19 COPD). Sixty-five percent had difficulty climbing stairs, 48% bathing, 39% dressing, and 36% mobilizing. Increased disability was independently associated with increased symptom burden (odds ratio, 1.08 [95% CI:1.02-1.15], P = 0.01) and walking unaided (z = 2.35, P = 0.02), but not with primary diagnosis (z = -0.47, P = 0.64). Disability generally increased over time but with wide interindividual variation. CONCLUSION: Disability in activities of daily living in advanced cancer or COPD is common, associated with increased symptom burden, and may be attenuated by use of assistive devices. Individual disability trajectories vary widely, with diverse disability profiles. Services should include rehabilitative interventions, guided by disability in individual activities of daily living

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

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

What is the impact of population ageing on the future provision of end-of-life care? Population-based projections of place of death.

BACKGROUND: Population ageing represents a global challenge for future end-of-life care. Given new trends in place of death, it is vital to examine where the rising number of deaths will occur in future years and implications for health and social care. AIM: To project where people will die from 2015 to 2040 across all care settings in England and Wales. DESIGN: Population-based trend analysis and projections using simple linear modelling. Age- and gender-specific proportions of deaths in hospital, care home, home, hospice and 'other' were applied to numbers of expected future deaths. Setting/population: All deaths (2004-2014) from death registration data and predicted deaths (2015-2040) from official population forecasts in England and Wales. RESULTS: Annual deaths are projected to increase from 501,424 in 2014 (38.8% aged 85 years and over) to 635,814 in 2040 (53.6% aged 85 years and over). Between 2004 and 2014, proportions of home and care home deaths increased (18.3%-22.9% and 16.7%- 21.2%) while hospital deaths declined (57.9%-48.1%). If current trends continue, numbers of deaths in care homes and homes will increase by 108.1% and 88.6%, with care home the most common place of death by 2040. If care home capacity does not expand and additional deaths occur in hospital, hospital deaths will start rising by 2023. CONCLUSION: To sustain current trends, end-of-life care provision in care homes and the community needs to double by 2040. An infrastructure across care settings that supports rising annual deaths is urgently needed; otherwise, hospital deaths will increase.The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This work is independent research funded by Cicely Saunders International and The Atlantic Philanthropies (grant number 24610). 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. I.J.H. is an NIHR Senior Investigator. C.J.E. is funded by a Health Education England (HEE)/NIHR Senior Clinical Lectureship. B.G. is funded by the Calouste Gulbenkian Foundation. The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health

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

Influences on Care Preferences of Older People with Advanced Illness: A Systematic Review and Thematic Synthesis.

OBJECTIVES: To determine and explore the influences on care preferences of older people with advanced illness and integrate our results into a model to guide practice and research. DESIGN: Systematic review using Medline, Embase, PsychINFO, Web of Science, and OpenGrey databases from inception to February 2017 and reference and citation list searching. Included articles investigated influences on care preference using qualitative or quantitative methodology. Thematic synthesis of qualitative articles and narrative synthesis of quantitative articles were undertaken. SETTING: Hospital and community care settings. PARTICIPANTS: Older adults with advanced illness, including people with specific illnesses and markers of advanced disease, populations identified as in the last year of life, or individuals receiving palliative care (N = 15,164). MEASUREMENTS: The QualSys criteria were used to assess study quality. RESULTS: Of 12,142 search results, 57 articles were included. Family and care context, illness, and individual factors interact to influence care preferences. Support from and burden on family and loved ones were prominent influences on care preferences. Mechanisms by which preferences are influenced include the process of trading-off between competing priorities, making choices based on expected outcome, level of engagement, and individual ability to form and express preferences. CONCLUSION: Family is particularly important as an influence on care preferences, which are influenced by complex interaction of family, individual, and illness factors. To support preferences, clinicians should consider older people with illnesses and their families together as a unit of care.Cicely Saunders International Atlantic Philanthropies. Grant Number: 24610 Collaboration for Leadership in Applied Health Research and Care, South London National Institute for Health Research (NIHR) King's Health Partners St. George's University London St George's Healthcare National Health Service (NHS) Trus

Associations of sickness absence for pain in the low back, neck and shoulders with wider propensity to pain

Objectives: To explore the association of sickness absence ascribed to pain at specific anatomical sites with wider propensity to musculoskeletal pain.Methods: As part of the CUPID (Cultural and Psychosocial Influences on Disability) study, potential risk factors for sickness absence from musculoskeletal pain were determined for 11 922 participants from 45 occupational groups in 18 countries. After approximately 14 months, 9119 (78%) provided follow-up information about sickness in the past month because of musculoskeletal pain, including 8610 who were still in the same job. Associations with absence for pain at specific anatomical sites were assessed by logistic regression and summarised by ORs with 95% CIs.Results: 861 participants (10%) reported absence from work because of musculoskeletal pain during the month before follow-up. After allowance for potential confounders, risk of absence ascribed entirely to low back pain (n=235) increased with the number of anatomical sites other than low back that had been reported as painful in the year before baseline (ORs 1.6 to 1.7 for ≥4 vs 0 painful sites). Similarly, associations with wider propensity to pain were observed for absence attributed entirely to pain in the neck (ORs up to 2.0) and shoulders (ORs up to 3.4).Conclusions: Sickness absence for pain at specific anatomical sites is importantly associated with wider propensity to pain, the determinants of which extend beyond established risk factors such as somatising tendency and low mood. Better understanding of why some individuals are generally more prone to musculoskeletal pain might point to useful opportunities for prevention