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Purpose: Disability in activities of daily living (ADL) is a common unmet need among people with advanced respiratory disease. Rehabilitation could help prolong independence, but indicators for timely intervention in this population are lacking. This study aimed to identify trajectories of disability in ADLs over time, and predicting factors, in advanced respiratory disease. Method: Multi-site prospective cohort study in people with advanced non-small cell lung cancer (NSCLC), chronic obstructive pulmonary disease (COPD) or interstitial lung disease (ILD), recruited from hospital or community services, throughout England. Disability in basic (Barthel Index) and instrumental (Lawton–Brody IADL Scale) ADLs were assessed monthly over six months. Visual graphical analysis determined individual trajectories. Multivariate logistic regression examined predictors of increasing disability in basic and instrumental ADLs. Findings: Between March 2020 and January 2021, we recruited participants with a diagnosis of NSCLC (n = 110), COPD (n = 72), and ILD (n = 19). 151 participants completed ≥3 timepoints and were included in the longitudinal analysis. Mobility limitation was an independent predictor of increasing disability in instrumental ADLs (odds ratio, 1⋅41 [CI: 1⋅14–1⋅74], p = 0⋅002). Conclusion: Mobility limitation could be used as a simple referral criterion across people with advanced respiratory disease to ensure timely rehabilitation that targets independence in ADLs. IMPLICATION FOR REHABILITATION: To our knowledge this is the first prospective cohort study of trajectories of disability in activities of daily living (ADL) in advanced respiratory disease, including recruitment during the Covid-19 pandemic. It adds to existing evidence by identifying individual variability in trajectories of ADL disability which are undetected at group level. The identification of mobility limitation as a predictor of increasing ADL disability, while controlling for malignant or non-malignant respiratory disease, is novel and has practical utility. Our findings have implications for clinical care, as early identification of functional decline through use of mobility limitation tools could flag early referral to rehabilitation services, potentially preventing or delaying forthcoming functional decline and avoiding reactive crisis management. Mobility limitation is a predictor of increasing disability in activities of daily living in advanced disease, which could be used to flag early referral to rehabilitation services, to help prevent or delay forthcoming functional decline and avoid reactive crisis management [ABSTRACT FROM AUTHOR]

Background: Understanding how socioeconomic position influences the symptoms and concerns of patients approaching the end of life is important for planning more equitable care. Data on this relationship is lacking, particularly for patients with non-cancer conditions. Aim: To analyse the association between socioeconomic position and the symptoms and concerns of older adult patients seen by specialist palliative care. Design: Secondary analysis of cross-sectional, routinely collected electronic patient data. We used multivariable linear regression with robust standard errors, to predict scores on the three subscales of the Integrated Palliative care Outcome Scale (IPOS; physical symptoms, emotional symptoms and communication and practical concerns) based on patient level of deprivation, measured using Index of Multiple Deprivation. Setting/participants: Consecutive inpatients aged 60 years and over, seen by specialist palliative care at two large teaching hospitals in London between 1st January 2016 and 31st December 2019. Results: Seven thousand eight hundred and sixty patients were included, 38.3% had cancer. After adjusting for demographic and clinical characteristics, patients living in the most deprived areas had higher (worse) predicted mean scores on the communication and practical subscale than patients living in the least deprived areas, 5.38 (95% CI: 5.10, 5.65) compared to 4.82 (4.62, 5.02) respectively. This effect of deprivation diminished with increasing age. Deprivation was not associated with scores on the physical or emotional symptoms subscales. Conclusions: Targetting resources to address practical and communication concerns could be a strategy to reduce inequalities. Further research in different hospitals and across different settings using patient centred outcome measures is needed to examine inequalities. [ABSTRACT FROM AUTHOR]

Background: Palliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients' symptom self-management, independence and social participation throughout advanced illness. Rehabilitation services were highly disrupted during the Covid-19 pandemic. Aim: To understand rehabilitation provision in palliative care services during the Covid-19 pandemic, identifying and reflecting on adaptative and innovative practice to inform ongoing provision. Design: Cross-sectional national online survey. Setting/participants: Rehabilitation leads for specialist palliative care services across hospice, hospital, or community settings, conducted from 30/07/20 to 21/09/2020. Findings: 61 completed responses (England, n = 55; Scotland, n = 4; Wales, n = 1; and Northern Ireland, n = 1) most frequently from services based in hospices (56/61, 92%) providing adult rehabilitation. Most services (55/61, 90%) reported rehabilitation provision becoming remote during Covid-19 and half reported reduced caseloads. Rehabilitation teams frequently had staff members on sick-leave with suspected/confirmed Covid-19 (27/61, 44%), redeployed to other services/organisations (25/61, 41%) or furloughed (15/61, 26%). Free text responses were constructed into four themes: (i) fluctuating shared spaces; (ii) remote and digitised rehabilitation offer; (iii) capacity to provide and participate in rehabilitation; (iv) Covid-19 as a springboard for positive change. These represent how rehabilitation services contracted, reconfigured, and were redirected to more remote modes of delivery, and how this affected the capacity of clinicians and patients to participate in rehabilitation. Conclusion: This study demonstrates how changes in provision of rehabilitation during the pandemic could act as a springboard for positive changes. Hybrid models of rehabilitation have the potential to expand the equity of access and reach of rehabilitation within specialist palliative care. [ABSTRACT FROM AUTHOR]

Objectives: The main objective of this study is to determine the feasibility of recruiting and retaining patients recently diagnosed with thoracic cancer to a trial of short-term integrated rehabilitation; evaluate uptake of theoretically informed components targeting physical function, symptom self-management and participation; estimate sample size requirements for an efficacy trial. Design: Parallel group randomized controlled feasibility trial. Setting: Three U.K. hospitals. Participants: Patients ⩽eight weeks of thoracic cancer diagnosis, Eastern Cooperative Oncology Group Performance Status 0–3, any cancer stage and treatment plan. Interventions: Participants randomly allocated (1:1) to short-term integrated rehabilitation and standard care or standard care alone over 30 days. Main measures: Primary: participant recruitment and retention, targeting ⩾30% of eligible patients enrolling and ⩾50% of participants reporting outcomes at 30 days. Secondary: intervention fidelity; missing data and performance of outcome measures for self-efficacy, symptoms, physical activity and health-related quality of life. Results: Of 159 eligible patients approached, 54 (34%) were recruited. A total of 44 (82%) and 39 (72%) participants reported outcomes at 30 and 60 days, respectively. Intervention fidelity was high. Rehabilitation was delivered across 3 (1–3) sessions over 32 (22–45) days (median (range)). Changes in clinical outcomes were modest but most apparent at 60 days for health-related quality of life: Functional Assessment of Cancer Therapy Lung Cancer score median (interquartile range) change 9.7 (−12.0 to 16.0) rehabilitation versus 2.3 (−15.0 to 14.5) standard care. Conclusion: A trial to examine efficacy of short-term integrated rehabilitation for people newly diagnosed with thoracic cancer is feasible. A sample of 336 participants could detect a meaningful effect on health-related quality of life as the primary outcome. [ABSTRACT FROM AUTHOR]

Background: Strategies in many countries have sought to improve palliative care and reduce hospital deaths for non-cancer patients, but their effects are not evaluated. We aimed to determine the trends and factors associated with dying in hospital in two common progressive respiratory diseases, and the impact of a national end of life care (EoLC) strategy to reduce deaths in hospital.Methods: This population-based observational study linked death registration data for people in England dying from chronic obstructive pulmonary disease (COPD) or interstitial pulmonary diseases (IPD). We plotted age- and sex-standardised trends, assessed during the pre-strategy (2001-2004), first strategy phase (2004-2008), and strategy intensification (2009-2014) periods, and identified factors associated with hospital death using multiple adjusted proportion ratios (PRs).Results: Over 14 years, 380,232 people died from COPD (334,520) or IPD (45,712). Deaths from COPD and IPD increased by 0.9% and 9.2% annually, respectively. Death in hospital was most common (67% COPD, 70% IPD). Dying in hospice was rare (0.9% COPD, 2.9% IPD). After a plateau in 2004-2005, hospital deaths fell (PRs 0.92-0.94). Co-morbidities and deprivation independently increased the chances of dying in hospital, with larger effects in IPD (PRs 1.01-1.55) than COPD (PRs 1.01-1.39) and dose-response gradients. The impact of multimorbidity increased over time; hospital deaths did not fall for people with two or more co-morbidities in COPD, nor one or more in IPD. Living in rural areas (PRs 0.94-0.94) or outside London (PRs, 0.89-0.98) reduced the chances of hospital death. In IPD, increased age reduced the likelihood of hospital death (PR 0.81, ≥ 85 versus ≤ 54 years); divergently, in COPD, being aged 65-74 years was associated with increased hospital deaths (PR 1.13, versus ≤ 54 years). The independent effects of sex and marital status differed for COPD versus IPD (PRs 0.89-1.04); in COPD, hospital death was associated with being married.Conclusions: The EoLC strategy appeared to have contributed to tangible reductions in hospital deaths, but did not reach people with multimorbidity and this gap widened over time. Integrating palliative care earlier in the disease trajectory especially in deprived areas and cities, and where multimorbidity is present, should be boosted, taking into account the different demographic factors in COPD and IPD. [ABSTRACT FROM AUTHOR]

Background: Exercise is increasingly recognized as a core component of palliative rehabilitation. The group exercise model is often adopted as a means of reaching more patients with limited resource. Despite the growth of quantitative research examining this area of practice, few qualitative studies have looked at the patient experience of participating in group exercise in a palliative setting, and most exclude patients with a non-cancer diagnosis. Methods: The aim of this study was to explore patients' experiences of participating in group exercise classes in a hospice setting. In this qualitative, phenomenological study, nine patients participating in a group exercise programme at a South London hospice completed semi-structured interviews. Participants were purposively sampled by gender, age, ethnicity and diagnosis; to include diagnoses across cancer, respiratory and neurological conditions. Transcripts were interpreted using thematic analysis. Results: All patients reported positive experiences of participating in group exercise classes. Improvements reported in physical function had a positive effect on ability to complete activities of daily living and enhanced patient mood. Other reported psychosocial benefits included: promotion of self-management; space and opportunity for reflection; supportive relationships; sharing of information; and a deeper appreciation of patients' own abilities. Conclusion: This study highlights the positive experiences and value of group exercise classes to groups of people with diverse cancer and non-cancer conditions. The physical, emotional and psychosocial benefits suggest hospices and other palliative services should explore similar programmes as part of their rehabilitation services. The recognition that exercise groups can be mixed and need not be bespoke to one condition has positive cost and staff resource ramifications. [ABSTRACT FROM AUTHOR]

Objectives To identify factors associated with end-of-life (EoL) transition from usual place of care to the hospital as place of death for people aged 75 and older. Design Population-based mortality follow-back survey. Setting Deaths over 6 months in 2012 in two unitary authorities in England covering 800 square miles with more than 1 million residents. Participants A random sample of people aged 75 and older who died in a care home or hospital and all those who died at home or in a hospice unit (N = 882). Cases were identified from death registrations. The person who registered the death (a relative for 98.9%) completed the survey. Measurements The main outcome was EoL transition to the hospital as place of death versus no EoL transition to the hospital. Multivariable modified Poisson regression was used to examine factors (illness, demographic, environmental) related to EoL transition to the hospital. Results Four hundred forty-three (50.2%) individuals responded, describing the care of the people who died. Most died from nonmalignant conditions (76.3%) at a mean age of 87.4 ± 6.4. One hundred forty-six (32.3%) transitioned to the hospital and died there. Transition was more likely for individuals with respiratory disease than for those with cancer (prevalence ratio ( PR) = 2.07, 95% confidence interval ( 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 the hospital for older people, there needs to be improved 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. [ABSTRACT FROM AUTHOR]

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 were 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 co-ordinate 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. [ABSTRACT FROM AUTHOR]

Background: Patients with advanced cancer frequently experience functional impairment and reduced quality of life. Therapeutic exercise can provide benefit and be made accessible through the use of tailored programmes. Most studies examining exercise programmes for people with advanced cancer have used quantitative outcome measures and focussed on objective physical function, therefore offer a limited perspective on the experience of exercise participation. Methods: This qualitative study explored patients' experiences of an exercise programme within a palliative care setting. The interviews focussed on the perceived impact on all aspects of quality of life. Results: Nine people with advanced cancer, attending a hospice-based exercise programme, completed a one-to-one interview with a senior physiotherapist to explore the physical, emotional, and social impacts of their participation. Interviews were audiotaped, transcribed verbatim and analysed using interpretive phenomenological analysis. Patients reported an awareness of the positive physical, psychological, and social consequences of exercising. Their experiences reflected on all dimensions of quality of life, the impact of others and the sense of meaning gained through participation in exercise. Conclusion: Our findings highlight that exercise in palliative care should not be viewed solely a physical intervention, but one that has potential to enhance many aspects of patients' quality of life. [ABSTRACT FROM AUTHOR]

Background Evidence suggests exercise may benefit patients with advanced progressive illness and some hospice day services now provide dedicated gym space. However, supporting data for such a service development are limited. We describe patient referrals, interventions, feedback, and potential impact of a nine-session, outpatient, hospice-based, circuit exercise programme. Methods Consecutive referrals to physiotherapy over a 6-month period commencing March 2013 were followed prospectively. Physical function (short physical performance battery (SPPB), grip strength), fatigue (Functional Assessment of Chronic Illness Therapy), psychological well-being (General Health Questionnaire), and patient satisfaction (FACIT-PS) were assessed pre- and post-programme. Results Of 212 referrals, 61 (29%) with a range of cancer and non-cancer diagnoses (median [inter-quartile range] survival 67 [50–137] days) were considered appropriate for the circuits of whom 54 (89%) started. There were no statistical differences between those completing and not-completing with regards to age, diagnosis, social status, or survival. In completers (n = 28), 4-m gait speed (mean Δ [95% confidence intervals] 0.23 [0.03, 0.44] m/seconds), five sit-to-stand time (mean Δ −5.44 [−10.43, −0.46] seconds) and overall SPPB score changed statistically, while grip strength did not (mean Δ 0.65 [−1.39, 2.96] kg). Psychological well-being, quality of life, and fatigue remained unchanged. Patients felt the physiotherapists gave clear explanations, understood their needs, and would recommend the service to others. Conclusion A hospice-based programme is one way to offer exercise to a range of patients with advanced progressive illness. Despite excellent feedback, only half of patients completed the nine-session programme in full and evidence of benefit was limited. Future work should explore the broader benefits of participation and whether delivering programmes or elements of them in shorter time frames is more beneficial. [ABSTRACT FROM AUTHOR]

Context: Evidence of symptom control outcomes in severe COVID is scant.Objectives: To determine changes in symptoms among people severely ill or dying with COVID supported by palliative care, and associations with treatments and survival.Methods: Multicentre cohort study of people with COVID across England and Wales supported by palliative care services, during the pandemic in 2020 and 2021. We analysed clinical, demographic and survival data, symptom severity at baseline (referral to palliative care, first COVID assessment) and at three follow-up assessments using the Integrated Palliative care Outcome Scale - COVID version.Results: We included 572 patients from 25 services, mostly hospital support teams; 496 (87%) were newly referred to palliative care with COVID, 75 (13%) were already supported by palliative care when they contracted COVID. At baseline, patients had a mean of 2.4 co-morbidities, mean age 77 years, a mean of five symptoms, and were often bedfast or semiconscious. The most prevalent symptoms were: breathlessness, weakness/lack of energy, drowsiness, anxiety, agitation, confusion/delirium, and pain. Median time in palliative care was 46 hours; 77% of patients died. During palliative care, breathlessness, agitation, anxiety, delirium, cough, fever, pain, sore/dry mouth and nausea improved; drowsiness became worse. Common treatments were low dose morphine and midazolam. Having moderate to severe breathlessness, agitation and multimorbidity were associated with shorter survival.Conclusion: Symptoms of COVID quickly improved during palliative care. Breathlessness, agitation and multimorbidity could be used as triggers for timelier referral, and symptom guidance for wider specialities should build on treatments identified in this study. [ABSTRACT FROM AUTHOR]

Globally, a rising number of people live into advanced age and die with multimorbidity and frailty. Palliative care is advocated as a person-centred approach to reduce health-related suffering and promote quality of life. However, no evidence-based interventions exist to deliver community-based palliative care for this population. To evaluate the impact of the short-term integrated palliative and supportive care intervention for older people living with chronic noncancer conditions and frailty on clinical and economic outcomes and perceptions of care. Single-blind trial with random block assignment to usual care or the intervention and usual care. The intervention comprised integrated person-centred palliative care delivered by multidisciplinary palliative care teams working with general practitioners and community nurses. Main outcome was change in five key palliative care symptoms from baseline to 12-weeks. Data analysis used intention to treat and complete cases to examine the mean difference in change scores and effect size between the trial arms. Economic evaluation used cost-effectiveness planes and qualitative interviews explored perceptions of the intervention. Four National Health Service general practices in England with recruitment of patients aged ≥75 years, with moderate to severe frailty, chronic noncancer condition(s) and ≥2 symptoms or concerns, and family caregivers when available. 50 patients were randomly assigned to receive usual care (n = 26, mean age 86.0 years) or the intervention and usual care (n = 24, mean age 85.3 years), and 26 caregivers (control n = 16, mean age 77.0 years; intervention n = 10, mean age 77.3 years). Participants lived at home (n = 48) or care home (n = 2). Complete case analysis (n = 48) on the main outcome showed reduced symptom distress between the intervention compared with usual care (mean difference -1.20, 95% confidence interval -2.37 to -0.027) and medium effect size (omega squared = 0.071). Symptom distress reduced with decreased costs from the intervention compared with usual care, demonstrating cost-effectiveness. Patient (n = 19) and caregiver (n = 9) interviews generated themes about the intervention of 'Little things make a big difference' with optimal management of symptoms and 'Care beyond medicines' of psychosocial support to accommodate decline and maintain independence. This palliative and supportive care intervention is an effective and cost-effective approach to reduce symptom distress for older people severely affected by chronic noncancer conditions. It is a clinically effective way to integrate specialist palliative care with primary and community care for older people with chronic conditions. Further research is indicated to examine its implementation more widely for people at home and in care homes. Trial registration : Controlled-Trials.com ISRCTN 45837097 Tweetable abstract : Specialist palliative care integrated with district nurses and GPs is cost-effective to reduce symptom distress for older people severely affected by chronic conditions. [ABSTRACT FROM AUTHOR]

Background: Many patients prefer to avoid hospital-based care towards the end of life, yet hospitalisation is common and more likely for people with low socioeconomic position. The reasons underlying this socioeconomic inequality are not well understood. This study investigated health, service access, and social support as potential mediating pathways between socioeconomic position and receipt of hospital-based care towards the end of life., Methods: For this observational cohort study, we included deceased participants from the nationally representative English Longitudinal Study of Ageing of people aged 50 years or older in England. We used a multiple mediation model with age-adjusted and gender-adjusted probit regression to estimate the direct effect of socioeconomic position (measured by wealth and education) on death in hospital and three or more hospital admissions in the last 2 years of life, and the indirect effects of socioeconomic position via three mediators: health and function, access to health-care services, and social support., Findings: 737 participants were included (314 [42·6%] female, 423 [57·4%] male), with a median age at death of 78 years (IQR 71-85). For death in hospital, higher wealth had a direct negative effect (probit coefficient -0·16, 95% CI -0·25 to -0·06), which was not mediated by any of the pathways tested. For frequent hospital admissions, health and function mediated the effect of wealth (-0·04, -0·08 to -0·01), accounting for 34·6% of the total negative effect of higher wealth (-0·13, -0·23 to -0·02). Higher wealth was associated with better health and function (0·25, 0·18 to 0·33). Education was associated with the outcomes only indirectly via wealth., Interpretation: Our findings suggest that worse health and function could partly explain why people with lower wealth have more hospital admissions, highlighting the importance of socioeconomically driven health differences in explaining patterns of hospital use towards the end of life. The findings should raise awareness about the related risk factors of low wealth and worse health for patients approaching the end of life, and strengthen calls for resource allocation to be made on the basis of health need and socioeconomic profile., Funding: Dunhill Medical Trust Fellowship Grant (RTF74/0116)., (Copyright © 2021 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY 4.0 license. Published by Elsevier Ltd.. All rights reserved.)