Publications by authors named "Catherine J Evans"

44 Publications

Integrating Comprehensive Geriatric Assessment for people with COPD and frailty starting pulmonary rehabilitation: the Breathe Plus feasibility trial protocol.

ERJ Open Res 2021 Jan 29;7(1). Epub 2021 Mar 29.

King's College London, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, London, UK.

One in five people with COPD also lives with frailty. People living with both COPD and frailty are at increased risk of poorer health and outcomes, and face challenges to completing pulmonary rehabilitation. Integrated approaches that are adapted to the additional context of frailty are required. The aim of the present study is to determine the feasibility of conducting a randomised controlled trial of an integrated Comprehensive Geriatric Assessment for people with COPD and frailty starting pulmonary rehabilitation. This is a multicentre, mixed-methods, assessor-blinded, randomised, parallel group, controlled feasibility trial ("Breathe Plus"; ISRCTN13051922). We aim to recruit 60 people aged ≥50 with both COPD and frailty referred for pulmonary rehabilitation. Participants will be randomised 1:1 to receive usual pulmonary rehabilitation, or pulmonary rehabilitation with an additional Comprehensive Geriatric Assessment. Outcomes (physical, psycho-social and service use) will be measured at baseline, 90 days and 180 days. We will also collect service and trial process data, and conduct qualitative interviews with a sub-group of participants and staff. We will undertake descriptive analysis of quantitative feasibility outcomes (recruitment, retention, missing data, blinding, contamination, fidelity), and framework analysis of qualitative feasibility outcomes (intervention acceptability and theory, outcome acceptability). Recommendations on progression to a full trial will comprise integration of quantitative and qualitative data, with input from relevant stakeholders. This study has been approved by a UK Research Ethics Committee (ref.: 19/LO/1402). This protocol describes the first study testing the feasibility of integrating a Comprehensive Geriatric Assessment alongside pulmonary rehabilitation, and testing this intervention within a mixed-methods randomised controlled trial.
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http://dx.doi.org/10.1183/23120541.00717-2020DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8005693PMC
January 2021

Characteristics and mortality rates among patients requiring intermediate care: a national cohort study using linked databases.

BMC Med 2021 Feb 12;19(1):48. Epub 2021 Feb 12.

King's College London, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, Bessemer Road, London, SE5 9PJ, England.

Background: Adults increasingly live and die with chronic progressive conditions into advanced age. Many live with multimorbidity and an uncertain illness trajectory with points of marked decline, loss of function and increased risk of end of life. Intermediate care units support mainly older adults in transition between hospital and home to regain function and anticipate and plan for end of life. This study examined the patient characteristics and the factors associated with mortality over 1 year post-admission to an intermediate care unit to inform priorities for care.

Methods: A national cohort study of adults admitted to intermediate care units in England using linked individual-level Hospital Episode Statistics and death registration data. The main outcome was mortality within 1 year from admission. The cohort was examined as two groups with significant differences in mortality between main diagnosis of a non-cancer condition and cancer. Data analysis used Kaplan-Meier curves to explore mortality differences between the groups and a time-dependant Cox proportional hazards model to determine mortality risk factors.

Results: The cohort comprised 76,704 adults with median age 81 years (IQR 70-88) admitted to 220 intermediate care units over 1 year in 2016. Overall, 28.0% died within 1 year post-admission. Mortality varied by the main diagnosis of cancer (total n = 3680, 70.8% died) and non-cancer condition (total n = 73,024, 25.8% died). Illness-related factors had the highest adjusted hazard ratios [aHRs]. At 0-28 days post-admission, risks were highest for non-cancer respiratory conditions (pneumonia (aHR 6.17 [95%CI 4.90-7.76]), chronic obstructive pulmonary disease (aHR 5.01 [95% CI 3.78-6.62]), dementia (aHR 5.07 [95% CI 3.80-6.77]) and liver disease (aHR 9.75 [95% CI 6.50-14.6]) compared with musculoskeletal disorders. In cancer, lung cancer showed largest risk (aHR 1.20 [95%CI 1.04-1.39]) compared with cancer 'other'. Risks increased with high multimorbidity for non-cancer (aHR 2.57 [95% CI 2.36-2.79]) and cancer (aHR 2.59 [95% CI 2.13-3.15]) (reference: lowest).

Conclusions: One in four patients died within 1 year. Indicators for palliative care assessment are respiratory conditions, dementia, liver disease, cancer and rising multimorbidity. The traditional emphasis on rehabilitation and recovery in intermediate care units has changed with an ageing population and the need for greater integration of palliative care.
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http://dx.doi.org/10.1186/s12916-021-01912-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7880511PMC
February 2021

How many people will need palliative care in Scotland by 2040? A mixed-method study of projected palliative care need and recommendations for service delivery.

BMJ Open 2021 02 3;11(2):e041317. Epub 2021 Feb 3.

Primary Palliative Care Research Group, Usher Institute, University of Edinburgh, Edinburgh, UK.

Objective: To estimate future palliative care need and complexity of need in Scotland, and to identify priorities for future service delivery.

Design: We estimated the prevalence of palliative care need by analysing the proportion of deaths from defined chronic progressive illnesses. We described linear projections up to 2040 using national death registry data and official mortality forecasts. An expert consultation and subsequent online consensus survey generated recommendations on meeting future palliative care need.

Setting: Scotland, population of 5.4 million.

Participants: All decedents in Scotland over 11 years (2007 to 2017). The consultation had 34 participants; 24 completed the consensus survey.

Primary And Secondary Outcomes: Estimates of past and future palliative care need in Scotland from 2007 up to 2040. Multimorbidity was operationalised as two or more registered causes of death from different disease groups (cancer, organ failure, dementia, other). Consultation and survey data were analysed descriptively.

Results: We project that by 2040, the number of people requiring palliative care will increase by at least 14%; and by 20% if we factor in multimorbidity. The number of people dying from multiple diseases associated with different disease groups is projected to increase from 27% of all deaths in 2017 to 43% by 2040. To address increased need and complexity, experts prioritised sustained investment in a national digital platform, roll-out of integrated electronic health and social care records; and approaches that remain person-centred.

Conclusions: By 2040 more people in Scotland are projected to die with palliative care needs, and the complexity of need will increase markedly. Service delivery models must adapt to serve growing demand and complexity associated with dying from multiple diseases from different disease groups. We need sustained investment in secure, accessible, integrated and person-centred health and social care digital systems, to improve care coordination and optimise palliative care for people across care settings.
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http://dx.doi.org/10.1136/bmjopen-2020-041317DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7868264PMC
February 2021

Palliative Long-Term Abdominal Drains Versus Large Volume Paracentesis in Refractory Ascites Due to Cirrhosis (REDUCe Study): Qualitative Outcomes.

J Pain Symptom Manage 2020 Dec 19. Epub 2020 Dec 19.

Department of Clinical and Experimental Medicine, Brighton and Sussex Medical School, Brighton, UK; Department of Gastroenterology and Hepatology, Brighton and Sussex University Hospitals Trust, Brighton, UK. Electronic address:

Context: Palliative care remains suboptimal in end-stage liver disease (ESLD).

Objectives: We report qualitative outcomes from the REDUCe study. We aimed to explore and contrast experiences/perceptions/care pathways of patients with refractory ascites due to ESLD randomized to either palliative long-term abdominal drains (LTADs) (allow home drainage) vs. large volume paracentesis (LVP) (hospital drainage).

Methods: Concurrent embedded qualitative study in a 12-week feasibility randomized controlled trial. Telephone interviews were conducted, data being recorded, transcribed verbatim, and analyzed using applied thematic analysis, considered in terms of a pathway approach toward accessing health care. Quantitative outcomes were collected (integrated palliative outcome scale, short-form liver disease quality of life, EQ-5D-5 L, Zarit Burden Interview-12).

Results: Fourteen patients (six allocated LTAD and eight LVP) and eight nurses participated in the qualitative study. The patient journey in the LVP group could be hindered by challenges along the entire care pathway, from recognizing the need for drainage to a lengthy wait in hospital for drainage and/or to be discharged. These issues also impacted upon caregivers. In contrast, LTADs appeared to transform this care pathway at all levels across the patient's journey by removing the need for hospital drainage. Additional benefits included personalized care, improved symptom control of ascites, being at home, and regular support from community nurses. Nurses also viewed the LTAD favorably, though expressed the need for additional support should this become standard of care.

Conclusion: Patients and nurses expressed acceptability of palliative LTAD in ESLD and preference for this approach in enabling care at home. Proceeding to a definitive trial is feasible.

Trial Registration: ISRCTN30697116, date assigned: 07/10/2015.
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http://dx.doi.org/10.1016/j.jpainsymman.2020.12.007DOI Listing
December 2020

The effectiveness and cost-effectiveness of hospital-based specialist palliative care for adults with advanced illness and their caregivers.

Cochrane Database Syst Rev 2020 09 30;9:CD012780. Epub 2020 Sep 30.

Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.

Background: Serious illness is often characterised by physical/psychological problems, family support needs, and high healthcare resource use. Hospital-based specialist palliative care (HSPC) has developed to assist in better meeting the needs of patients and their families and potentially reducing hospital care expenditure. There is a need for clarity on the effectiveness and optimal models of HSPC, given that most people still die in hospital and also to allocate scarce resources judiciously.

Objectives: To assess the effectiveness and cost-effectiveness of HSPC compared to usual care for adults with advanced illness (hereafter patients) and their unpaid caregivers/families.

Search Methods: We searched CENTRAL, CDSR, DARE and HTA database via the Cochrane Library; MEDLINE; Embase; CINAHL; PsycINFO; CareSearch; National Health Service Economic Evaluation Database (NHS EED) and two trial registers to August 2019, together with checking of reference lists and relevant systematic reviews, citation searching and contact with experts to identify additional studies.

Selection Criteria: We included randomised controlled trials (RCTs) evaluating the impact of HSPC on outcomes for patients or their unpaid caregivers/families, or both. HSPC was defined as specialist palliative care delivered by a palliative care team that is based in a hospital providing holistic care, co-ordination by a multidisciplinary team, and collaboration between HSPC providers and generalists. HSPC was provided to patients while they were admitted as inpatients to acute care hospitals, outpatients or patients receiving care from hospital outreach teams at home. The comparator was usual care, defined as inpatient or outpatient hospital care without specialist palliative care input at the point of entry into the study, community care or hospice care provided outside of the hospital setting.

Data Collection And Analysis: We used standard methodological procedures expected by Cochrane. We assessed risk of bias and extracted data. To account for use of different scales across studies, we calculated standardised mean differences (SMDs) with 95% confidence intervals (CIs) for continuous data. We used an inverse variance random-effects model. For binary data, we calculated odds ratio (ORs) with 95% CIs. We assessed the evidence using GRADE and created a 'Summary of findings' table. Our primary outcomes were patient health-related quality of life (HRQoL) and symptom burden (a collection of two or more symptoms). Key secondary outcomes were pain, depression, satisfaction with care, achieving preferred place of death, mortality/survival, unpaid caregiver burden, and cost-effectiveness. Qualitative data was analysed where available.

Main Results: We identified 42 RCTs involving 7779 participants (6678 patients and 1101 caregivers/family members). Twenty-one studies were with cancer populations, 14 were with non-cancer populations (of which six were with heart failure patients), and seven with mixed cancer and non-cancer populations (mixed diagnoses). HSPC was offered in different ways and included the following models: ward-based, inpatient consult, outpatient, hospital-at-home or hospital outreach, and service provision across multiple settings which included hospital. For our main analyses, we pooled data from studies reporting adjusted endpoint values. Forty studies had a high risk of bias in at least one domain. Compared with usual care, HSPC improved patient HRQoL with a small effect size of 0.26 SMD over usual care (95% CI 0.15 to 0.37; I = 3%, 10 studies, 1344 participants, low-quality evidence, higher scores indicate better patient HRQoL). HSPC also improved other person-centred outcomes. It reduced patient symptom burden with a small effect size of -0.26 SMD over usual care (95% CI -0.41 to -0.12; I = 0%, 6 studies, 761 participants, very low-quality evidence, lower scores indicate lower symptom burden). HSPC improved patient satisfaction with care with a small effect size of 0.36 SMD over usual care (95% CI 0.41 to 0.57; I = 0%, 2 studies, 337 participants, low-quality evidence, higher scores indicate better patient satisfaction with care). Using home death as a proxy measure for achieving patient's preferred place of death, patients were more likely to die at home with HSPC compared to usual care (OR 1.63, 95% CI 1.23 to 2.16; I = 0%, 7 studies, 861 participants, low-quality evidence). Data on pain (4 studies, 525 participants) showed no evidence of a difference between HSPC and usual care (SMD -0.16, 95% CI -0.33 to 0.01; I = 0%, very low-quality evidence). Eight studies (N = 1252 participants) reported on adverse events and very low-quality evidence did not demonstrate an effect of HSPC on serious harms. Two studies (170 participants) presented data on caregiver burden and both found no evidence of effect of HSPC (very low-quality evidence). We included 13 economic studies (2103 participants). Overall, the evidence on cost-effectiveness of HSPC compared to usual care was inconsistent among the four full economic studies. Other studies that used only partial economic analysis and those that presented more limited resource use and cost information also had inconsistent results (very low-quality evidence). Quality of the evidence The quality of the evidence assessed using GRADE was very low to low, downgraded due to a high risk of bias, inconsistency and imprecision.

Authors' Conclusions: Very low- to low-quality evidence suggests that when compared to usual care, HSPC may offer small benefits for several person-centred outcomes including patient HRQoL, symptom burden and patient satisfaction with care, while also increasing the chances of patients dying in their preferred place (measured by home death). While we found no evidence that HSPC causes serious harms, the evidence was insufficient to draw strong conclusions. Although these are only small effect sizes, they may be clinically relevant at an advanced stage of disease with limited prognosis, and are person-centred outcomes important to many patients and families. More well conducted studies are needed to study populations with non-malignant diseases and mixed diagnoses, ward-based models of HSPC, 24 hours access (out-of-hours care) as part of HSPC, pain, achieving patient preferred place of care, patient satisfaction with care, caregiver outcomes (satisfaction with care, burden, depression, anxiety, grief, quality of life), and cost-effectiveness of HSPC. In addition, research is needed to provide validated person-centred outcomes to be used across studies and populations.
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http://dx.doi.org/10.1002/14651858.CD012780.pub2DOI Listing
September 2020

Implementation of a complex intervention to improve care for patients whose situations are clinically uncertain in hospital settings: A multi-method study using normalisation process theory.

PLoS One 2020 16;15(9):e0239181. Epub 2020 Sep 16.

Cicely Saunders Institute, Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, King's College London, London, United Kingdom.

Purpose: To examine the use of Normalisation Process Theory (NPT) to establish if, and in what ways, the AMBER care bundle can be successfully normalised into acute hospital practice, and to identify necessary modifications to optimise its implementation.

Method: Multi-method process evaluation embedded within a mixed-method feasibility cluster randomised controlled trial in two district general hospitals in England. Data were collected using (i) focus groups with health professionals (HPs), (ii) semi-structured interviews with patients and/or carers, (iii) non-participant observations of multi-disciplinary team meetings and (iv) patient clinical note review. Thematic analysis and descriptive statistics, with interpretation guided by NPT components (coherence; cognitive participation; collective action; reflexive monitoring). Data triangulated across sources.

Results: Two focus groups (26 HPs), nine non-participant observations, 12 interviews (two patients, 10 relatives), 29 clinical note reviews were conducted. While coherence was evident, with HPs recognising the value of the AMBER care bundle, cognitive participation and collective action presented challenges. Specifically: (1) HPs were unable and unwilling to operationalise the concept of 'risk of dying' intervention eligibility criteria (2) integration relied on a 'champion' to drive participation and ensure sustainability; and (3) differing skills and confidence led to variable engagement with difficult conversations with patients and families about, for example, nearness to end of life. Opportunities for reflexive monitoring were not routinely embedded within the intervention. Reflections on the use of the AMBER care bundle from HPs and patients and families, including recommended modifications became evident through this NPT-driven analysis.

Conclusion: To be successfully normalised, new clinical practices, such as the AMBER care bundle, must be studied within the wider context in which they operate. NPT can be used to the aid identification of practical strategies to assist in normalisation of complex interventions where the focus of care is on clinical uncertainty in acute hospital settings.
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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0239181PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7494119PMC
November 2020

Patient and public involvement in palliative care research: What works, and why? A qualitative evaluation.

Palliat Med 2021 Jan 11;35(1):151-160. Epub 2020 Sep 11.

Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, King's College London, London, UK.

Background: Public involvement is increasingly considered a prerequisite for high-quality research. However, involvement in palliative care is impeded by limited evidence on the best approaches for populations affected by life-limiting illness.

Aim: To evaluate a strategy for public involvement in palliative care and rehabilitation research, to identify successful approaches and areas for improvement.

Design: Co-produced qualitative evaluation using focus groups and interviews. Thematic analysis undertaken by research team comprising public contributors and researchers.

Setting/participants: Researchers and public members from a palliative care and rehabilitation research institute, UK.

Results: Seven public members and 19 researchers participated. Building and maintaining relationships, taking a flexible approach and finding the 'right' people were important for successful public involvement. Relationship building created a safe environment for discussing sensitive topics, although public members felt greater consideration of emotional support was needed. Flexibility supported involvement alongside unpredictable circumstances of chronic and life-limiting illness, and was facilitated by responsive communication, and opportunities for in-person and virtual involvement at a project- and institution-level. However, more opportunities for two-way feedback throughout projects was suggested. Finding the 'right' people was crucial given the diverse population served by palliative care, and participants suggested more care needed to be taken to identify public members with experience relevant to specific projects.

Conclusion: Within palliative care research, it is important for involvement to focus on building and maintaining relationships, working flexibly, and identifying those with relevant experience. Taking a strategic approach and developing adequate infrastructure and networks can facilitate public involvement within this field.
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http://dx.doi.org/10.1177/0269216320956819DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7797607PMC
January 2021

COVID-19 and 'conversations not had' with people with frailty in acute settings.

J Health Serv Res Policy 2020 10;25(4):211-212

Health services researcher, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, UK.

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http://dx.doi.org/10.1177/1355819620943236DOI Listing
October 2020

Experiences of Pulmonary Rehabilitation in People Living with Chronic Obstructive Pulmonary Disease and Frailty. A Qualitative Interview Study.

Ann Am Thorac Soc 2020 10;17(10):1213-1221

Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, and.

People living with both chronic obstructive pulmonary disease (COPD) and frailty have high potential to benefit from pulmonary rehabilitation but face challenges completing programs. However, research to understand ways to optimize participation in this group is lacking. To explore the experiences, needs, and preferences of people with COPD and frailty referred for outpatient pulmonary rehabilitation. Semistructured interviews with people with COPD and physical frailty, purposively sampled by age, living status, level of frailty, and completion of pulmonary rehabilitation. Thematic analysis with a critical realist perspective was used, involving relevant stakeholders with clinical, academic, and lived experience for interpretive rigor. Nineteen people with COPD and frailty were interviewed, with a median age of 78 years (range, 58-88). Nine did not complete their pulmonary rehabilitation program. Four themes were identified: striving to adapt to multidimensional loss, tensions of balancing support with independence, pulmonary rehabilitation as a challenge worth facing, and overcoming unpredictable disruptions to participation. Participants described constantly adapting to their changing health and resulting multidimensional losses (e.g., functional abilities, relationships, confidence). This involved traversing between independence and seeking support, set against a mismatch between their needs and what support is available. People with COPD and frailty can be highly motivated to participate in pulmonary rehabilitation, despite the physical and mental demands it entails, and report a range of benefits. Yet in the context of changeable health, they must often overcome multiple unpredictable disruptions to completing rehabilitation programs. Participant determination and flexibility of services can facilitate ongoing attendance, but for some, these unpredictable disruptions erode their motivation to attend. People with COPD and frailty experience accumulating, multidimensional loss. This group are motivated to complete pulmonary rehabilitation but often require additional support and flexibility owing to fluctuating and unpredictable health. Person-centered approaches should be considered to minimize disruptive health events and support pulmonary rehabilitation participation and completion. Service adaptations could allow more flexibility to meet the changing needs of this group and enable communication around how pulmonary rehabilitation might align with their priorities.
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http://dx.doi.org/10.1513/AnnalsATS.201910-800OCDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7640624PMC
October 2020

Randomised clinical trial: palliative long-term abdominal drains vs large-volume paracentesis in refractory ascites due to cirrhosis.

Aliment Pharmacol Ther 2020 07 1;52(1):107-122. Epub 2020 Jun 1.

Brighton, UK.

Background: Palliative care remains suboptimal in end-stage liver disease.

Aim: To inform a definitive study, we assessed palliative long-term abdominal drains in end-stage liver disease to determine recruitment, attrition, safety/potential effectiveness, questionnaires/interview uptake/completion and make a preliminary cost comparison.

Methods: A 12-week feasibility nonblinded randomised controlled trial comparing large-volume paracentesis vs long-term abdominal drains in refractory ascites due to end-stage liver disease with fortnightly home visits for clinical/questionnaire-based assessments. Study success criteria were attrition not >50%, <10% long-term abdominal drain removal due to complications, the long-term abdominal drain group to spend <50% ascites-related study time in hospital vs large-volume paracentesis group and 80% questionnaire/interview uptake/completion.

Results: Of 59 eligible patients, 36 (61%) were randomised, 17 to long-term abdominal drain and 19 to large-volume paracentesis. Following randomisation, median number (IQR) of hospital ascitic drains (long-term abdominal drain group vs large-volume paracentesis group) were 0 (0-1) vs 4 (3-7); week 12 serum albumin (g/L) and serum creatinine (μmol/L) were 29 (26.5-32.5) vs 30 (25-35) and 104.5 (81-115.5) vs 127 (63-158) respectively. Total attrition was 42% (long-term abdominal drain group 47%, large-volume paracentesis group 37%). Median (IQR) fortnightly community/hospital/social care ascites-related costs and percentage study time in hospital were lower in the long-term abdominal drain group, £329 (253-580) vs £843 (603-1060) and 0% (0-0.74) vs 2.75% (2.35-3.84) respectively. Self-limiting cellulitis/leakage occurred in 41% (7/17) in the long-term abdominal drain group vs 11% (2/19) in the large-volume paracentesis group; peritonitis incidence was 6% (1/17) vs 11% (2/19) respectively. Questionnaires/interview uptake/completion were ≥80%; interviews indicated that long-term abdominal drains could transform the care pathway.

Conclusions: The REDUCe study demonstrates feasibility with preliminary evidence of long-term abdominal drain acceptability/effectiveness/safety and reduction in health resource utilisation.

Trial Registration: ISRCTN30697116, date assigned: 07/10/2015.
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http://dx.doi.org/10.1111/apt.15802DOI Listing
July 2020

Improving Exercise-Based Interventions for People Living with Both COPD and Frailty: A Realist Review.

Int J Chron Obstruct Pulmon Dis 2020 20;15:841-855. Epub 2020 Apr 20.

Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.

Background: People living with both chronic obstructive pulmonary disease (COPD) and frailty have high potential to benefit from exercise-based interventions, including pulmonary rehabilitation, but face challenges completing them. Research to understand ways to optimise exercise-based interventions in this group is lacking. We aimed to understand how exercise-based interventions might improve outcomes for people living with both COPD and frailty.

Methods: This realist review used database searches and handsearching until October 2019 to identify articles of relevance to exercise-based interventions for people living with COPD and frailty. A scoping search explored what is important about the context of living with COPD and frailty, and what mechanisms might be important in how exercise-based interventions result in their intended outcomes. Through discussion with stakeholders, the review scope was refined to areas deemed pertinent to improving care. We retained articles within this refined scope and identified additional articles through targeted handsearching. Data were extracted and synthesised in a narrative, prioritised by relevance and rigour.

Results: Of 344 records identified, 35 were included in the review and 20 informed the final synthesis. Important contextual factors to consider included: negative beliefs about themselves and exercise-based interventions; heterogenous presentation and comorbidities; decreased reserves and multidimensional loss; and experiencing unpredictable health and disruptions. In these circumstances, mechanisms that may help maximise outcomes from exercise-based interventions included: trusting relationships; creating a shared understanding of needs; having the capacity to address multidimensional concerns; being able to individualise approaches to needs and priorities; and flexible approaches to intervention delivery. Mixed-methods research and explicit theorising were often absent.

Conclusion: Building trusting relationships, understanding priorities, using individualised and multidisciplinary approaches, and flexible service delivery can improve the value of exercise-based interventions for people living with both COPD and frailty. Development and evaluation of new and adapted interventions should consider these principles.
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http://dx.doi.org/10.2147/COPD.S238680DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7182688PMC
April 2020

Understanding usual care in randomised controlled trials of complex interventions: A multi-method approach.

Palliat Med 2020 05 21;34(5):667-679. Epub 2020 Feb 21.

Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, King's College London, London, UK.

Background: Evaluations of complex interventions compared to usual care provided in palliative care are increasing. Not describing usual care may affect the interpretation of an intervention's effectiveness, yet how it can be described remains unclear.

Aim: To demonstrate the feasibility of using multi-methods to describe usual care provided in randomised controlled trials (RCTs) of complex interventions, shown within a feasibility cluster RCT.

Design: Multi-method approach comprising usual care questionnaires, baseline case note review and focus groups with ward staff completed at study end. Thematic analysis of qualitative data, descriptive statistics of quantitative data, followed by methodological triangulation to appraise approach in relation to study aim.

Setting/participants: Four general medical wards chosen from UK hospitals. Purposive sampling of healthcare professionals for usual care questionnaires, and focus groups. Review of 20 patients' notes from each ward who died during admission or within 100 days of discharge.

Results: Twenty-three usual care questionnaires at baseline, two focus groups comprising 20 healthcare professionals and 80 case note reviews. Triangulation of findings resulted in understanding the usual care provided to the targeted population in terms of context, structures, processes and outcomes for patients, families and healthcare professionals. Usual care was described, highlighting (1) similarities and embedded practices, (2) heterogeneity and (3) subtle changes in care during the trial within and across sites.

Conclusions: We provide a feasible approach to defining usual care that can be practically adopted in different settings. Understanding usual care enhances the reliability of tested complex interventions, and informs research and policy priorities.
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http://dx.doi.org/10.1177/0269216320905064DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7238505PMC
May 2020

Feasibility and acceptability of a culturally adapted advance care planning intervention for people living with advanced cancer and their families: A mixed methods study.

Palliat Med 2020 05 21;34(5):651-666. Epub 2020 Feb 21.

Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, London, UK.

Background: Increasing evidence shows that advance care planning is effective in improving outcomes. However, its applicability and acceptability outside Western cultures remain unknown. Examination of relevant cultural adaptations is required prior to wider adoption.

Aim: To examine the feasibility and acceptability of a culturally adapted advance care planning intervention in a Taiwanese inpatient hospital for advanced cancer patients, family members and healthcare professionals.

Methods: A single-group, non-controlled, mixed methods feasibility study guided by a previously developed logic model. The culturally adapted advance care planning intervention represented a one-time intervention, comprising pre-advance care planning preparation and follow-up consultation. Qualitative interviews explored participants' view on their involvement in the study. Patients' medical records were examined to assess intervention fidelity. Findings from both data sets were integrated following analysis.

Results:  = 29 participants ( = 10 patients;  = 10 family members and  = 9 healthcare professionals) participated in the intervention, of who 28 completed follow-up interviews. Of the 10 advance care planning interventions delivered, most components ( = 10/13) were met. Key contextual moderators influencing the intervention feasibility included: (1) resource constraints resulting in increased workload; (2) care decisions informed by relatives' experiences of care; (3) the requirement for financial and policy support; and (4) a presumption for end-of-life care provision and surrogate decision-making. Six areas of intervention refinement were identified for future research.

Conclusion: Implementing a culturally adapted advance care planning intervention in an inpatient hospital setting in Taiwan is possible. The participants reported the intervention to be acceptable. However, careful attention to the conceptual underpinning using local primary data is imperative for its success.
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http://dx.doi.org/10.1177/0269216320902666DOI Listing
May 2020

A collaborative approach in dementia care to improve clinical effectiveness and priorities for research through audit.

Int J Palliat Nurs 2019 Dec;25(12):588-595

Cicely Saunders Institute of Palliative Care, King's College London and HEE/NIHR Senior Clinical Lecturer and Honorary Nurse Consultant in Palliative Care, Sussex Community NHS Foundation Trust, Brighton.

Background: To provide appropriate cost-effective care for an ageing population, realignment of care provision to conditions common in advanced age, notably, dementia and multi-morbidities is required. The use of outcome measures in practice may enable this.

Aim: A collaborative baseline audit was undertaken to understand how best to implement outcome measures into services for people with dementia across clinical settings.

Methods: An academic institution set up a 6-month collaborative baseline audit in 11 English sites. Measures comprised: symptoms/concerns (Integrated Palliative care Outcome Scale for Dementia); Phase of Illness; functional status (Australia-modified Karnofsky Performance Scale); and dementia severity (Functional Assessment Staging).

Findings: Measures were completed at first assessment for 225 people with dementia across nine sites. Their completion promoted comprehensive assessments, but challenges also existed, including recording the prevalence/severity of non-physical symptoms by proxy.

Conclusions: The joining together of clinical academic expertise enabled mobilisation of expert knowledge into and from clinical practice.
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http://dx.doi.org/10.12968/ijpn.2019.25.12.588DOI Listing
December 2019

Empowering Better End-of-Life Dementia Care (EMBED-Care): A mixed methods protocol to achieve integrated person-centred care across settings.

Int J Geriatr Psychiatry 2020 08 15;35(8):820-832. Epub 2020 Jan 15.

Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London, London, UK.

Objectives: Globally, the number of people with dementia who have palliative care needs will increase fourfold over the next 40 years. The Empowering Better End-of-Life Dementia Care (EMBED-Care) Programme aims to deliver a step change in care through a large sequential study, spanning multiple work streams.

Methods: We will use mixed methods across settings where people with dementia live and die: their own homes, care homes, and hospitals. Beginning with policy syntheses and reviews of interventions, we will develop a conceptual framework and underpinning theory of change. We will use linked data sets to explore current service use, care transitions, and inequalities and predict future need for end-of-life dementia care. Longitudinal cohort studies of people with dementia (including young onset and prion dementias) and their carers will describe care transitions, quality of life, symptoms, formal and informal care provision, and costs. Data will be synthesised, underpinned by the Knowledge-to-Action Implementation Framework, to design a novel complex intervention to support assessment, decision making, and communication between patients, carers, and inter-professional teams. This will be feasibility and pilot tested in UK settings. Patient and public involvement and engagement, innovative work with artists, policymakers, and third sector organisations are embedded to drive impact. We will build research capacity and develop an international network for excellence in dementia palliative care.

Conclusions: EMBED-Care will help us understand current and future need, develop novel cost-effective care innovations, build research capacity, and promote international collaborations in research and practice to ensure people live and die well with dementia.
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http://dx.doi.org/10.1002/gps.5251DOI Listing
August 2020

The impact of population ageing on end-of-life care in Scotland: projections of place of death and recommendations for future service provision.

BMC Palliat Care 2019 Dec 12;18(1):112. Epub 2019 Dec 12.

Usher Institute, University of Edinburgh, Edinburgh, Scotland, UK.

Background: Global annual deaths are rising. It is essential to examine where future deaths may occur to facilitate decisions regarding future service provision and resource allocation.

Aims: To project where people will die from 2017 to 2040 in an ageing country with advanced integrated palliative care, and to prioritise recommendations based on these trends.

Methods: Population-based trend analysis of place of death for people that died in Scotland (2004-2016) and projections using simple linear modelling (2017-2040); Transparent Expert Consultation to prioritise recommendations in response to projections.

Results: Deaths are projected to increase by 15.9% from 56,728 in 2016 (32.8% aged 85+ years) to 65,757 deaths in 2040 (45% aged 85+ years). Between 2004 and 2016, proportions of home and care home deaths increased (19.8-23.4% and 14.5-18.8%), while the proportion of hospital deaths declined (58.0-50.1%). If current trends continue, the numbers of deaths at home and in care homes will increase, and two-thirds will die outside hospital by 2040. To sustain current trends, priorities include: 1) to increase and upskill a community health and social care workforce through education, training and valuing of care work; 2) to build community care capacity through informal carer support and community engagement; 3) to stimulate a realistic public debate on death, dying and sustainable funding.

Conclusion: To sustain current trends, health and social care provision in the community needs to grow to support nearly 60% more people at the end-of-life by 2040; otherwise hospital deaths will increase.
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http://dx.doi.org/10.1186/s12904-019-0490-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6907353PMC
December 2019

What influences patients' decisions regarding palliative care in advance care planning discussions? Perspectives from a qualitative study conducted with advanced cancer patients, families and healthcare professionals.

Palliat Med 2019 12 1;33(10):1299-1309. Epub 2019 Aug 1.

Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.

Background: The concept of advance care planning is largely derived from Western countries. However, the decision-making process and drivers for choosing palliative care in non-Western cultures have received little attention.

Aim: To explore the decision-making processes and drivers of receiving palliative care in advance care planning discussions from perspectives of advanced cancer patients, families and healthcare professionals in northern Taiwan.

Method: Semi-structured qualitative interviews with advanced cancer patients, their families and healthcare professionals independently from inpatient oncology and hospice units. Thematic analysis with analytical rigour enhanced by dual coding and exploration of divergent views.

Results: Forty-five participants were interviewed ( = 15 from each group). Three main decision-making trajectories were identified: (1) 'choose palliative care' was associated with patients' desire to reduce physical suffering from treatments, avoid being a burden to families and society, reduce futile treatments and donate organs to help others; (2) 'decline palliative care' was associated with patients weighing up perceived benefits to others as more important than benefits for themselves; and (3) 'no opportunity to choose palliative care' was associated with lack of opportunities to discuss potential benefits of palliative care, lack of staff skill in end-of-life communication, and cultural factors, notably filial piety.

Conclusion: Choice for palliative care among advanced cancer patients in Taiwan is influenced by three decision-making trajectories. Opinions from families are highly influential, and patients often lack information on palliative care options. Strategies to facilitate decision-making require staff confidence in end-of-life discussions, working with the patients and their family while respecting the influence of filial piety.
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http://dx.doi.org/10.1177/0269216319866641DOI Listing
December 2019

Which outcome domains are important in palliative care and when? An international expert consensus workshop, using the nominal group technique.

Palliat Med 2019 09 12;33(8):1058-1068. Epub 2019 Jun 12.

2 Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.

Background: When capturing patient-level outcomes in palliative care, it is essential to identify which outcome domains are most important and focus efforts to capture these, in order to improve quality of care and minimise collection burden.

Aim: To determine which domains of palliative care are most important for measurement of outcomes, and the optimal time period over which these should be measured.

Design: An international expert consensus workshop using nominal group technique. Data were analysed descriptively, and weighted according to ranking (1-5, lowest to highest priority) of domains. Participants' rationales for their choices were analysed thematically.

Setting/participants: In all, 33 clinicians and researchers working globally in palliative care outcome measurement participated. Two groups (n = 16; n = 17) answered one question each (either on domains or optimal timing). This workshop was conducted at the 9th World Research Congress of the European Association for Palliative Care in 2016.

Results: Participants' years of experience in palliative care and in outcome measurement ranged from 10.9 to 14.7 years and 5.8 to 6.4 years, respectively. The mean scores (weighted by rank) for the top-ranked domains were 'overall wellbeing/quality of life' (2.75), 'pain' (2.06), and 'information needs/preferences' (2.06), respectively. The palliative measure 'Phase of Illness' was recommended as the preferred measure of time period over which the domains were measured.

Conclusion: The domains of 'overall wellbeing/quality of life', 'pain', and 'information needs/preferences' are recommended for regular measurement, assessed using 'Phase of Illness'. International adoption of these recommendations will help standardise approaches to improving the quality of palliative care.
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http://dx.doi.org/10.1177/0269216319854154DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6691595PMC
September 2019

Patterns of emergency department attendance among older people in the last three months of life and factors associated with frequent attendance: a mortality follow-back survey.

Age Ageing 2019 09;48(5):680-687

Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, UK.

Background: frequent emergency department (ED) attendance at the end of life disrupts care continuity and contradicts most patients' preference for home-based care.

Objective: to examine factors associated with frequent (≥3) end of life ED attendances among older people to identify opportunities to improve care.

Methods: pooled data from two mortality follow-back surveys in England. Respondents were family members of people aged ≥65 who died four to ten months previously. We used multivariable modified Poisson regression to examine illness, service and sociodemographic factors associated with ≥3 ED attendances, and directed content analysis to explore free-text responses.

Results: 688 respondents (responses from 42.0%); most were sons/daughters (60.5%). Mean age at death was 85 years. 36.5% had a primary diagnosis of cancer and 16.3% respiratory disease. 80/661 (12.1%) attended ED ≥3 times, accounting for 43% of all end of life attendances. From the multivariable model, respiratory disease (reference cancer) and ≥2 comorbidities (reference 0) were associated with frequent ED attendance (adjusted prevalence ratio 2.12, 95% CI 1.21-3.71 and 1.81, 1.07-3.06). Those with ≥7 community nursing contacts (reference 0 contacts) were more likely to frequently attend ED (2.65, 1.49-4.72), whereas those identifying a key health professional were less likely (0.58, 0.37-0.88). Analysis of free-text found inadequate community support, lack of coordinated care and untimely hospital discharge were key issues.

Conclusions: assigning a key health professional to older people at increased risk of frequent end of life ED attendance, e.g. those with respiratory disease and/or multiple comorbidities, may reduce ED attendances by improving care coordination.
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http://dx.doi.org/10.1093/ageing/afz043DOI Listing
September 2019

Service Delivery Models to Maximize Quality of Life for Older People at the End of Life: A Rapid Review.

Milbank Q 2019 03;97(1):113-175

King's College London, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation.

Policy Points We identified two overarching classifications of integrated geriatric and palliative care to maximize older people's quality of life at the end of life. Both are oriented to person-centered care, but with differing emphasis on either function or symptoms and concerns. Policymakers should both improve access to palliative care beyond just the last months of life and increase geriatric care provision to maintain and optimize function. This would ensure that continuity and coordination for potentially complex care needs across the continuum of late life would be maintained, where the demarcation of boundaries between healthy aging and healthy dying become increasingly blurred. Our findings highlight the urgent need for health system change to improve end-of-life care as part of universal health coverage. The use of health services should be informed by the likelihood of benefits and intended outcomes rather than on prognosis.

Context: In an era of unprecedented global aging, a key priority is to align health and social services for older populations in order to support the dual priorities of living well while adapting to a gradual decline in function. We aimed to provide a comprehensive synthesis of evidence regarding service delivery models that optimize the quality of life (QoL) for older people at the end of life across health, social, and welfare services worldwide.

Methods: We conducted a rapid scoping review of systematic reviews. We searched MEDLINE, CINAHL, EMBASE, and CDSR databases from 2000 to 2017 for reviews reporting the effectiveness of service models aimed at optimizing QoL for older people, more than 50% of whom were older than 60 and in the last one or two years of life. We assessed the quality of these included reviews using AMSTAR and synthesized the findings narratively.

Results: Of the 2,238 reviews identified, we included 72, with 20 reporting meta-analysis. Although all the World Health Organization (WHO) regions were represented, most of the reviews reported data from the Americas (52 of 72), Europe (46 of 72), and/or the Western Pacific (28 of 72). We identified two overarching classifications of service models but with different target outcomes: Integrated Geriatric Care, emphasizing physical function, and Integrated Palliative Care, focusing mainly on symptoms and concerns. Areas of synergy across the overarching classifications included person-centered care, education, and a multiprofessional workforce. The reviews assessed 117 separate outcomes. A meta-analysis demonstrated effectiveness for both classifications on QoL, including symptoms such as pain, depression, and psychological well-being. Economic analysis and its implications were poorly considered.

Conclusions: Despite their different target outcomes, those service models classified as Integrated Geriatric Care or Integrated Palliative Care were effective in improving QoL for older people nearing the end of life. Both approaches highlight the imperative for integrating services across the care continuum, with service involvement triggered by the patient's needs and likelihood of benefits. To inform the sustainability of health system change we encourage economic analyses that span health and social care and examine all sources of finance to understand contextual inequalities.
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http://dx.doi.org/10.1111/1468-0009.12373DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6422603PMC
March 2019

Emotional labour in palliative and end-of-life care communication: A qualitative study with generalist palliative care providers.

Patient Educ Couns 2019 03 17;102(3):494-502. Epub 2018 Oct 17.

King's College London, Cicely Saunders Institute of Palliative Care, Policy, and Rehabilitation, London, UK; Sussex Community NHS Foundation Trust, Brighton General Hospital, Brighton, UK. Electronic address:

Objective: To explore generalist palliative care providers' experiences of emotional labour when undertaking conversations around palliative and end-of-life care with patients and families, to inform supportive strategies.

Methods: Semi-structured interviews conducted with generalist staff (those providing 'primary' or 'general' palliative care, not palliative care specialists) who had attended a communication workshop. Sampling was purposive (by gender, profession, experience). Data were analysed using a framework approach; a sample of transcripts were double-coded for rigour. Data collection and analysis were informed by theories of emotional labour, coping, and communication.

Results: Four ambulance staff, three nurses, two speech and language therapists, and one therapy assistant were interviewed. Five themes emerged: emotions experienced; emotion 'display rules'; emotion management; support needs; and perceived impact of emotional labour. Participants reported balancing 'human' and 'professional' expressions of emotion. Support needs included time for emotion management, workplace cultures that normalise emotional experiences, formal emotional support, and palliative and end-of-life care skills training.

Conclusion: Diverse strategies to support the emotional needs of generalist staff are crucial to ensure high-quality end-of-life care and communication, and to support staff well-being.

Practice Implications: Both formal and informal support is required, alongside skills training, to enable a supportive workplace culture and individual development.
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http://dx.doi.org/10.1016/j.pec.2018.10.013DOI Listing
March 2019

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

Eur J Public Health 2019 02;29(1):67-74

King's College London, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, London, UK.

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.
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http://dx.doi.org/10.1093/eurpub/cky241DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6345149PMC
February 2019

The conceptual models and mechanisms of action that underpin advance care planning for cancer patients: A systematic review of randomised controlled trials.

Palliat Med 2019 Jan 26;33(1):5-23. Epub 2018 Oct 26.

1 Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.

Background:: No systematic review has focused on conceptual models underpinning advance care planning for patients with advanced cancer, and the mechanisms of action in relation to the intended outcomes.

Aim:: To appraise conceptual models and develop a logic model of advance care planning for advanced cancer patients, examining the components, processes, theoretical underpinning, mechanisms of action and linkage with intended outcomes.

Design:: A systematic review of randomised controlled trials was conducted, and was prospectively registered on PROSPERO. Narrative synthesis was used for data analysis.

Data Sources:: The data sources were MEDLINE, CINAHL, PsycINFO, EMBASE, CENTRAL, PROSPERO, CareSearch, and OpenGrey with reference chaining and hand-searching from inception to 31 March 2017, including all randomised controlled trials with advance care planning for cancer patients in the last 12 months of life. Cochrane quality assessment tool was used for quality appraisal.

Results:: Nine randomised controlled trials were included, with only four articulated conceptual models. Mechanisms through which advance care planning improved outcomes comprised (1) increasing patients' knowledge of end-of-life care, (2) strengthening patients' autonomous motivation, (3) building patients' competence to undertake end-of-life discussions and (4) enhancing shared decision-making in a trustful relationship. Samples were largely highly educated Caucasian.

Conclusion:: The use of conceptual models underpinning the development of advance care planning is uncommon. When used, they identify the individual behavioural change. Strengthening patients' motivation and competence in participating advance care planning discussions are key mechanisms of change. Understanding cultural feasibility of the logic model for different educational levels and ethnicities in non-Western countries should be a research priority.
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http://dx.doi.org/10.1177/0269216318809582DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6291906PMC
January 2019

The future of end-of-life care.

Lancet 2018 09;392(10151):915-916

Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London SE5 9PJ, UK.

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http://dx.doi.org/10.1016/S0140-6736(18)31823-3DOI Listing
September 2018

How can a measure improve assessment and management of symptoms and concerns for people with dementia in care homes? A mixed-methods feasibility and process evaluation of IPOS-Dem.

PLoS One 2018 11;13(7):e0200240. Epub 2018 Jul 11.

Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King's College London, London, United Kingdom.

Background: Assessment of people with dementia is challenging; with undetected and under treated symptoms and concerns resulting in avoidable distress, and few evidence-based interventions to support this. We aimed to understand the mechanisms of action of a measure to support comprehensive assessment of people with dementia in care homes; and its acceptability, feasibility, and implementation requirements.

Methods: A qualitative study with an embedded quantitative component in three residential care homes, underpinned by an initial theoretical model of mechanisms of action. The measure, the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem), was introduced into the care of residents with dementia for 12 weeks. Qualitative data comprised focus groups and semi-structured interviews with family, care home staff, general practitioners and district nurses; and non-participant observations. Quantitative data comprised IPOS-Dem data. Directed content analysis for qualitative data, and descriptive statistics were used for quantitative data.

Findings: Key mechanisms of action were: improved observation and awareness of residents, collaborative assessment, comprehensive 'picture of the person', systematic record keeping, improved review and monitoring, care planning and changes to care provision, and facilitated multi-agency communication. Potential benefit included improved symptom management, improved comprehensive care, and increased family empowerment and engagement. IPOS-Dem was found to be acceptable and feasible. It was perceived as quick and easy to use, with proportion of overall missing data decreasing from 2.1% to 1.1% from baseline to final time points. 'Trust' in the measure was important; and leadership essential to ensure integration into care processes.

Conclusions: In a population with complex care needs, with challenges to assessment and barriers to multi-agency working, a measure introduced into routine care is feasible and acceptable, and supports assessment and management of symptoms and concerns. A refined theoretical model demonstrating the likely mechanisms of action was developed. Further evaluation is required to test its effectiveness.
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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0200240PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040756PMC
January 2019

Taking patient and public involvement online: qualitative evaluation of an online forum for palliative care and rehabilitation research.

Res Involv Engagem 2018 1;4:14. Epub 2018 May 1.

1Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, Bessemer Road, London, SE5 9PJ UK.

Plain English Summary: Patient and public involvement (PPI) is increasingly recognised as important in research. Most PPI takes place face-to-face, but this can be difficult for people who are unwell or have caring responsibilities. As these challenges are particularly common in palliative care and rehabilitation research, we developed an online forum for PPI: www.csipublicinvolvement.co.uk. In this study, we explored how well the online forum worked, if it is a suitable method for PPI, and how PPI members and researchers reacted to using it. We used an existing theory about online interventions to help choose the 'right' questions to ask participants. We invited PPI members and researchers who had used the online forum to participate in focus groups, and identified the most important themes discussed. Within this study, PPI members have helped with the interview questions, analysis, and write up. Overall, four PPI members and five researchers participated in the focus groups. Participants felt the online forum worked well and had multiple benefits. From the discussions, we identified four key questions to consider when developing online methods for PPI: how does the forum work, how does it engage people, how does it empower people, and what is the impact? Participants suggested the forum could be improved by being more PPI and less researcher focused. We conclude that when developing online methods of PPI, a functioning forum is not enough: it also needs to be engaging and empowering to have an impact. Future work can use these four domains when developing their own online PPI methods.

Abstract:

Background: Patient and public involvement (PPI) in research is increasingly recognised as important. Most PPI activities take place face-to-face, yet this can be difficult for people with ill health or caring responsibilities, and may exclude people from hard-to-reach populations (e.g. living in vulnerable social circumstances and/or remote geographical locations). These challenges are particularly pertinent in palliative care and rehabilitation research where people often live with, or care for someone with, advanced illness. In response to this, we aimed to test the functionality, feasibility, and acceptability of an online forum for PPI for palliative care and rehabilitation research (www.csipublicinvolvement.co.uk).

Methods: We conducted separate focus groups with PPI members and researchers who had used the online forum. Data collection was underpinned by DeLone and Mclean's model of information systems success. Focus groups were recorded, transcribed, and analysed using inductive thematic analysis. Dual coding by two authors ensured rigour, and attention was paid to divergent cases.

Results: Four PPI members and five researchers participated in the focus groups (two PPI focus groups, one researcher focus group). The online forum was perceived as functional, feasible, and acceptable. Our analysis identified four key questions to consider when developing online methods for PPI: (1) how does the forum work, (2) how does it engage people, (3) how does it empower people, and (4) what is the impact? PPI members felt that the online forum was too researcher led, and needed to be more PPI focussed.

Conclusions: When developing online methods of PPI, a functioning forum is not enough: it also needs to be engaging and empowering to have an impact. To optimise online involvement, future work should refer to these four domains and balance the needs of researchers and PPI members.
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http://dx.doi.org/10.1186/s40900-018-0097-zDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5928583PMC
May 2018

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

Palliat Med 2018 02 10;32(2):329-336. Epub 2017 Oct 10.

1 Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.

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.
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http://dx.doi.org/10.1177/0269216317734435DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5788077PMC
February 2018

Integrating palliative care into neurology services: what do the professionals say?

BMJ Support Palliat Care 2018 Mar 3;8(1):41-44. Epub 2017 Aug 3.

Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King's College London, London, UK.

Objectives: Evaluations of new services for palliative care in non-cancer conditions are few. OPTCARE Neuro is a multicentre trial evaluating the effectiveness of short-term integrated palliative care (SIPC) for progressive long-term neurological conditions. Here, we present survey results describing the current levels of collaboration between neurology and palliative care services and exploring the views of professionals towards the new SIPC service.

Methods: Neurology and palliative care teams from six UK trial sites (London, Nottingham, Liverpool, Cardiff, Brighton and Chertsey) were approached via email to complete an online survey. The survey was launched in July 2015 and consisted of multiple choice or open comment questions with responses collected using online forms.

Results: 33 neurology and 26 palliative care professionals responded. Collaborations between the two specialties were reported as being 'good/excellent' by 36% of neurology and by 58% of palliative care professionals. However, nearly half (45%) of neurology compared with only 12% of palliative care professionals rated current levels as being 'poor/none'. Both professional groups felt that the new SIPC service would influence future collaborations for the better. However, they identified a number of barriers for the new SIPC service such as resources and clinician awareness.

Conclusions: Our results demonstrate the opportunity to increase collaboration between neurology and palliative care services for people with progressive neurological conditions, and the acceptability of SIPC as a model to support this.

Trial Registration Number: ISRCTN18337380; Pre-results.
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http://dx.doi.org/10.1136/bmjspcare-2017-001354DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5879955PMC
March 2018

Development of a caregiver-reported measure to support systematic assessment of people with dementia in long-term care: The Integrated Palliative care Outcome Scale for Dementia.

Palliat Med 2017 Jul 25;31(7):651-660. Epub 2016 Oct 25.

Department of Palliative Care, Policy & Rehabilitation, Cicely Saunders Institute, King's College London, London, UK.

Background: Symptom burden is common for long-term care residents with dementia which if untreated compromises quality of life. Measurement tools can support assessment of symptoms and problems but are not widely used in long-term care settings. We developed the Integrated Palliative care Outcome Scale for Dementia derived from the Palliative care Outcome Scale, Palliative care Outcome Scale-Symptom and Integrated Palliative care Outcome Scale.

Aim: To examine the content validity, acceptability and comprehension of Integrated Palliative care Outcome Scale for Dementia for routine use in long-term care settings for people with dementia and to refine Integrated Palliative care Outcome Scale for Dementia.

Design: A multi-method qualitative study consisting of focus groups, semi-structured interviews and cognitive interviews.

Setting/participants: Three residential long-term care settings in London, UK. Focus group and semi-structured interview participants included caregiver staff, family, general practitioners and district nurses. Caregiver staff were sampled purposively for cognitive interviews.

Results: A total of 26 respondents participated in the focus groups ( n = 21) or semi-structured interviews ( n = 5) and 10 caregiver staff completed cognitive interviews. Additional symptoms and problems included agitation, wandering, sleep problems, communication problems and diarrhoea. Refinements or lay terms were required to improve comprehension and consistency of item response for nausea, drowsiness, delusions/hallucinations, agitation, loss of interest, communication problems and interaction. A video presentation was required to support comprehension of instructions and assessment of verbally compromised residents.

Conclusion: Integrated Palliative care Outcome Scale for Dementia is a comprehensive and acceptable caregiver-reported measure to detect symptoms and problems in dementia. It is suitable for caregiver staff without professional training as it has been refined and tailored to maximise caregiver expertise, ready for further psychometric testing.
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http://dx.doi.org/10.1177/0269216316675096DOI Listing
July 2017