Understanding patient and family utilisation of community-based palliative care services out-of-hours: Additional analysis of systematic review evidence using narrative synthesis.

BACKGROUND: Community-based out-of-hours services are an integral component of end-of-life care. However, there is little understanding of how patients and families utilise these services. This additional analysis of a systematic review aims to understand and identify patterns of out-of-hours service use and produce recommendations for future service design. METHOD: Data on service use was extracted and secondary analysis undertaken, from a systematic review of models of community out-of-hours services. Narrative synthesis was completed, addressing four specific aspects of service use: 1.Times when patients/families/healthcare professionals need to contact out-of-hours services; 2. Who contacts out-of-hours services; 3. Whether a telephone call, centre visit or home visit is provided; 4. Who responds to out-of-hours calls. RESULTS: Community-based out-of-hours palliative care services were most often accessed between 5pm and midnight, especially on weekdays (with reports of 69% of all calls being made out-of-hours). Family members and carers were the most frequent callers to of the services (making between 60% and 80% of all calls). The type of contact (telephone, centre visit or home visit) varied based on what was offered and on patient need. Over half of services were led by a single discipline (nurse). CONCLUSIONS: Out-of-hours services are highly used up to midnight, and particularly by patients' family and carers. Recommendations to commissioners and service providers are to: • Increase provision of out-of-hours services between 5pm and midnight to reflect the increased use at these times. • Ensure that family and carers are provided with clear contact details for out-of-hours support. • Ensure patient records can be easily accessed by health professionals responding to calls, making the triage process easier. • Listen to patients, family and carers in the design of out-of-hours services, including telephone services. • Collect data systematically on out-of-hours-service use and on outcomes for patients who use the service.

Exploring pathways to optimise care in malignant bowel obstruction (EPOC): Protocol for a three-phase critical realist approach to theory-led intervention development for shared decision-making.

INTRODUCTION: Malignant bowel obstruction is a distressing complication of cancer, causing pain, nausea and vomiting, and often has a poor prognosis. Severe and rapidly developing symptoms, a lack of robust clinical guidelines and the need for multidisciplinary input make treatment decision-making challenging. Sharing decision-making with people with malignant bowel obstruction and their caregivers can be difficult, and inconsistent communication creates serious deficiencies in care by amplifying patients' distress and uncertainty. Little attention has been paid to the implicit influences on this process-for example, the role of discipline-related norms and the beliefs of decision-makers. This study will explore how these processes work and develop interventions to improve shared decision-making. METHODS AND ANALYSIS: Exploring Pathways to Optimise Care (EPOC) is a three-phase study set within a critical realist framework: (i) realist review, to develop explanatory theory describing collaborative decision-making in the management of malignant bowel obstruction; (ii) an in-depth interview study using modified grounded theory to explore the active ingredients of this collaboration in practice settings; and (iii) the presentation to stakeholders (practitioners, patients and caregivers) of integrated results from Phase I (theory developed from the literature) and Phase II (theory developed from current practice) as a basis for intervention mapping. We aim to produce recommendations to address the challenges, and to develop a set of tools to (i) aid interaction around shared decision-making and (ii) aid interprofessional interaction around the management of this condition. Registration details: The realist review is registered with PROSPERO (CRD42022308251).

Development of a Core Outcome Set for the research and assessment of inoperable malignant bowel obstruction.

BACKGROUND: Malignant bowel obstruction is experienced by 15% of people with advanced cancer, preventing them from eating and drinking and causing pain, nausea and vomiting. Surgery is not always appropriate. Management options include tube or stent drainage of intestinal contents and symptom control using medication. Published literature describing palliative interventions uses a broad range of outcome measures, few of which are patient-relevant. This hinders evidence synthesis, and fails to consider the perspectives of people undergoing treatment. AIMS: To develop a Core Outcome Set for the assessment of inoperable malignant bowel obstruction with clinician, patient and caregiver involvement, using COMET methodology (Core Outcome Measures in Effectiveness Trials). METHODS: A systematic review of clinical trials and observational studies, a rapid review of the qualitative literature and in-depth patient and clinician interviews were conducted to identify a comprehensive list of outcomes. Outcomes were compared and consolidated by the study Steering Group and Patient and Public Involvement contributors, and presented to an international clinical Expert Panel for review. Outcomes from the finalised list were rated for importance in a three-round international Delphi process: results of two survey rounds were circulated to respondents, and two separate consensus meetings were conducted with clinicians and with patients and caregivers via virtual conferencing, using live polling to reach agreement on a Core Outcome Set. RESULTS: 130 unique outcomes were identified. Following the independent Expert Panel review, 82 outcomes were taken into round 1 of the Delphi survey; 24 outcomes reached criteria for critical importance across all stakeholder groups and none reached criteria for dropping. All outcomes rated critically important were taken forward for re-rating in round 2 and all other outcomes dropped. In round 2, all outcomes were voted critically important by at least one stakeholder group. Round 2 outcomes were presented again at online consensus meetings, categorised as high ranking (n = 9), middle ranking (n = 7) or low ranking (n = 8). Stakeholders reached agreement on 16 core outcomes across four key domains: Symptom control, Life impact, Treatment outcomes, and Communication and patient preferences. CONCLUSION: Use of this Core Outcome Set can help to address current challenges in making sense of the evidence around treatment for inoperable malignant bowel obstruction to date, and underpin a more robust future approach. Clearer communication and an honest understanding between all stakeholders will help to provide a basis for responsible decision-making in this distressing situation in clinical practice.

Non-pharmacological interventions to manage psychological distress in patients living with cancer: a systematic review.

BACKGROUND: Psychological distress is common in patients with cancer; interfering with physical and psychological wellbeing, and hindering management of physical symptoms. Our aim was to systematically review published evidence on non-pharmacological interventions for cancer-related psychological distress, at all stages of the disease. METHODS: We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. The review was registered on PROSPERO (CRD42022311729). Searches were made using eight online databases to identify studies meeting our inclusion criteria. Data were collected on outcome measures, modes of delivery, resources and evidence of efficacy. A meta-analysis was planned if data allowed. Quality was assessed using the Mixed Methods Appraisal Tool (MMAT). RESULTS: Fifty-nine studies with 17,628 participants were included. One third of studies included mindfulness, talking or group therapies. Half of all studies reported statistically significant improvements in distress. Statistically significant intervention effects on distress were most prevalent for mindfulness techniques. Four of these mindfulness studies had moderate effect sizes (d = -0.71[95% CI: -1.04, -0.37] p < 0.001) (d = -0.60 [95% CI: -3.44, -0.89] p < 0.001) (d = -0.77 [CI: -0.146, -1.954] p < 0.01) (d = -0.69 [CI: -0.18, -1.19] p = 0.008) and one had a large effect size (d = -1.03 [95% CI: -1.51, -0.54] p < 0.001). Heterogeneity of studies precluded meta-analysis. Study quality was variable and some had a high risk of bias. CONCLUSIONS: The majority of studies using a mindfulness intervention in this review are efficacious at alleviating distress. Mindfulness-including brief, self-administered interventions-merits further investigation, using adequately powered, high-quality studies. SYSTEMATIC REVIEW REGISTRATION: This systematic review is registered on PROSPERO, number CRD42022311729.

Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members.

BACKGROUND: Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects preferences, priorities and abilities. OBJECTIVES: The aim was to identify preferences for patient-reported outcome measure design (recall period, response format, length, administration mode) to improve the feasibility, acceptability, comprehensibility and relevance of a child and family-centred outcome measure, among children with life-limiting conditions and their family members. METHOD: A semi-structured qualitative interview study seeking the perspectives of children with life-limiting conditions, their siblings and parents on measure design was conducted. Participants were purposively sampled and recruited from nine UK sites. Verbatim transcripts were analysed using framework analysis. RESULTS: A total of 79 participants were recruited: 39 children aged 5-17 years (26 living with a life-limiting condition; 13 healthy siblings) and 40 parents (of children aged 0-17 years). Children found a short recall period and a visually appealing measure with ten questions or fewer most acceptable. Children with life-limiting conditions were more familiar with using rating scales such as numeric and Likert than their healthy siblings. Children emphasised the importance of completing the measure alongside interactions with a healthcare professional to enable them to talk about their responses. While parents assumed that electronic completion methods would be most feasible and acceptable, a small number of children preferred paper. CONCLUSIONS: This study demonstrates that children with life-limiting conditions can engage in communicating preferences regarding the design of a patient-centred outcome measure. Where possible, children should be given the opportunity to participate in the measure development process to enhance acceptability and uptake in clinical practice. Results of this study should be considered in future research on outcome measure development in children.

The roles and experiences of informal carers providing care to people with advanced cancer in Africa-A systematic review and critical interpretive analysis.

There is an increasing prevalence of cancer in Africa with approximately 80% of cancers diagnosed at an advanced stage. High out-of-pocket healthcare costs and overstretched health systems lead to heavy reliance on informal carers for cancer care. This study aims to explore the roles and experiences of informal carers including the impact of cancer care on individuals and communities and support available for carers. We carried out a systematic review following PRISMA reporting guidelines and used critical interpretative synthesis to identify themes and develop an informal carers' experience framework. We searched nine databases and screened 8,123 articles from which 31 studies were included in the review. Most studies were from Sub-Saharan Africa (29/31, 94%), particularly Uganda (9, 29%). Carers were mostly women, aged 30-40 years, and siblings, spouses, or children. Caring roles included care coordination, fundraising, and emotional support. Caring was time-consuming with some carers reporting 121 hours/week of caring, associated with the inability to pursue paid work and depression. Four themes demonstrated carers' experiences: 1) intrapersonal factors: strong sense of familial obligation, and grappling with gender roles, 2) interpersonal factors: impact of a cancer diagnosis on households, changing social and sexual relationships, 3) community factors: navigating cultural norms on nature and location of care, and 4) health system influences: barriers to accessing healthcare services, and tensions between traditional and biomedical medicine. These themes aligned with Bronfenbrenner's social ecological model which aided our development of a framework for understanding informal carers' experiences'. Our review highlights multifaceted roles and experiences of informal carers in Africa, amidst cultural and community impacts. Carers experience a strong obligation and willingly undertake the role of carer, but at the expense of their social, economic, and psychological wellbeing. Support for carers, including flexible working hours/ carers' allowance, should be incorporated as part of universal health coverage.

Deaths at home, area-based deprivation and the effect of the Covid-19 pandemic: An analysis of mortality data across four nations.

BACKGROUND: The number and proportion of home deaths in the UK increased during the Covid-19 pandemic. It is not known whether these changes were experienced disproportionately by people from different socioeconomic groups. AIM: To examine the association between home death and socioeconomic position during the Covid-19 pandemic, and how this changed between 2019 and 2020. DESIGN: Retrospective cohort study using population-based individual-level mortality data. SETTING/PARTICIPANTS: All registered deaths in England, Wales, Scotland and Northern Ireland. The proportion of home deaths between 28th March and 31st December 2020 was compared with the same period in 2019. We used Poisson regression models to evaluate the association between decedent's area-based level of deprivation and risk of home death, as well as the interaction between deprivation and year of death, for each nation separately. RESULTS: Between the 28th March and 31st December 2020, 409,718 deaths were recorded in England, 46,372 in Scotland, 26,410 in Wales and 13,404 in Northern Ireland. All four nations showed an increase in the adjusted proportion of home deaths between 2019 and 2020, ranging from 21 to 28%. This increase was lowest for people living in the most deprived areas in all nations, with evidence of a deprivation gradient in England. CONCLUSIONS: The Covid-19 pandemic exacerbated a previously described socioeconomic inequality in place of death in the UK. Further research to understand the reasons for this change and if this inequality has been sustained is needed.

Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis [version 2; peer review: 2 approved].

Background: In England, Integrated Care Systems have been established to improve integration of care, as part of the NHS Long Term Plan. For people near the end of life, palliative care can improve integration of care. We aimed to understand whether and how palliative and end of life care was included in Integrated Care System strategies, and to consider priorities for strengthening this. Methods: Documentary analysis of Integrated Care System (ICS) strategies, using summative content analysis, was performed. Google searches were used to identify NHS Trust, Clinical Commissioning Group or ICS websites. We searched these websites to identify strategies. Key terms were used to identify relevant content. Themes were mapped onto an adapted logic model for integrated care. Results: 23 Integrated Care System strategy documents were identified. Of these, two did not mention any of the key terms, and six highlighted palliative and end of life care as either a priority, area of focus, or an ambition. While most (19/23) strategies included elements that could be mapped onto the adapted logic model for integrated care, the thread from enablers and components, to structures, processes, outcomes, and impact was incomplete. Conclusions: Greater prioritisation of palliative and end of life care within recently established Integrated Care Systems could improve outcomes for people near the end of life, as well as reduce reliance on acute hospital care. Integrated Care Systems should consider involving patients, the public and palliative care stakeholders in the ongoing development of strategies. For strategies to be effective, our adapted logic model can be used to outline how different components of care fit together to achieve defined outcomes and impact.

Adaptation and multicentre validation of a patient-centred outcome scale for people severely ill with COVID (IPOS-COV).

BACKGROUND: Patient-centred measures to capture symptoms and concerns have rarely been reported in severe COVID. We adapted and tested the measurement properties of the proxy version of the Integrated Palliative care Outcome Scale-IPOS-COV for severe COVID using psychometric approach. METHODS: We consulted experts and followed consensus-based standards for the selection of health status measurement instruments and United States Food and Drug Administration guidance for adaptation and analysis. Exploratory Factor Analysis and clinical perspective informed subscales. We tested the internal consistency reliability, calculated item total correlations, examined re-test reliability in stable patients, and also evaluated inter-rater reproducibility. We examined convergent and divergent validity of IPOS-COV with the Australia-modified Karnofsky Performance Scale and evaluated known-groups validity. Ability to detect change was examined. RESULTS: In the adaptation phase, 6 new items were added, 7 items were removed from the original measure. The recall period was revised to be the last 12-24 h to capture fast deterioration in COVID. General format and response options of the original Integrated Palliative care Outcome Scale were preserved. Data from 572 patients with COVID from across England and Wales seen by palliative care services were included. Four subscales were supported by the 4-factor solution explaining 53.5% of total variance. Breathlessness-Agitation and Gastro-intestinal subscales demonstrated good reliability with high to moderate (a = 0.70 and a = 0.67) internal consistency, and item-total correlations (0.62-0.21). All except the Flu subscale discriminated well between patients with differing disease severity. Inter-rater reliability was fair with ICC of 0.40 (0.3-0.5, 95% CI, n = 324). Correlations between the subscales and AKPS as predicted were weak (r = 0.13-0.26) but significant (p < 0.01). Breathlessness-Agitation and Drowsiness-Delirium subscales demonstrated good divergent validity. Patients with low oxygen saturation had higher mean Breathlessness-Agitation scores (M = 5.3) than those with normal levels (M = 3.4), t = 6.4 (186), p < 0.001. Change in Drowsiness-Delirium subscale correctly classified patients who died. CONCLUSIONS: IPOS-COV is the first patient-centred measure adapted for severe COVID to support timely management. Future studies could further evaluate its responsiveness and clinical utility with clinimetric approaches.

A non-randomised controlled study to assess the effectiveness of a new proactive multidisciplinary care intervention for older people living with frailty.

BACKGROUND: Integrated care may improve outcomes for older people living with frailty. We aimed to assess the effectiveness of a new, anticipatory, multidisciplinary care service in improving the wellbeing and quality of life (QoL) of older people living with severe frailty. METHODS: A community-based non-randomised controlled study. Participants (≥65 years, electronic Frailty Index ≥0.36) received either the new integrated care service plus usual care, or usual care alone. Data collection was at three time points: baseline, 2-4 weeks, and 10-14 weeks. The primary outcome was patient wellbeing (symptoms and other concerns) at 2-4 weeks, measured using the Integrated Palliative care Outcome Scale (IPOS); the secondary outcome was QoL, measured using EQ-5D-5L. To test duration of effect and safety, wellbeing and QoL were also measured at 10-14 weeks. Descriptive statistics were used to characterise and compare intervention and control groups (eligible but had not accessed the new service), with t-test, Chi-Square, or Mann-Whitney U tests (as appropriate) to test differences at each time point. Generalised linear modelling, with propensity score matching, was used for further group comparisons. Data were analysed using STATA v17. RESULTS: 199 intervention and 54 control participants were recruited. At baseline, intervention and control groups were similar in age, gender, ethnicity, living status, and body mass index, but not functional status or area deprivation score. At 2-4 weeks, wellbeing had improved in the intervention group but worsened in the control (median IPOS -5 versus 2, p<0.001). QoL improved in the intervention group but was unchanged in the control (median EQ-5D-5L 0.12, versus 0.00, p<0.001). After adjusting for age, gender, and living status, the intervention group had an average total IPOS score reduction at 2-4 weeks of 6.34 (95% CI: -9.01: -4.26, p<0.05); this improvement was sustained, with an average total IPOS score reduction at 10-14 weeks of 6.36 (95% CI: -8.91:-3.80, p<0.05). After propensity score matching based on functional status/area deprivation, modelling showed similar results, with a reduction in IPOS score at 2-4 weeks in the intervention group of 7.88 (95% CI: -12.80: -2.96, p<0.001). CONCLUSIONS: Our findings suggest that the new, anticipatory, multidisciplinary care service may have improved the overall wellbeing and quality of life of older people living with frailty at 2-4 weeks and the improvement in wellbeing was sustained at three months. ETHICS APPROVAL: NHS Research Ethics Committee 18/YH/0470 and IRAS-250981. TRIAL REGISTRATION: The trial was retrospectively registered at the International Standard Randomised Controlled Trial Number (ISRCTN) registry (registration date: 01/08/2022, registration number: ISRCTN10613839).

Validity and Reliability of the Integrated Palliative Care Outcome Scale in Asian Heart Failure Patients.

Background: The Integrated Palliative Care Outcome Scale (IPOS) was developed in the United Kingdom for health assessment in advanced illness. Objectives: To evaluate the validity and reliability of a culturally adapted IPOS (both patient and staff versions) for heart failure (HF). Design/Setting: We recruited HF patients and staff from a tertiary hospital in Singapore. We collected patient IPOS, New York Heart Association (NYHA) status, Edmonton Symptom Assessment System (ESAS) and Minnesota Living with Heart Failure (MLHF) scores at baseline, and patient IPOS at follow-up. Each baseline patient IPOS was matched with a staff IPOS. Measurements: Pearson correlation coefficient (r) between ESAS, MLHF, and patient IPOS was calculated to assess construct validity. The two-sample T-test assessed difference in patient and staff IPOS scores across NYHA status and care settings for known-group validity. Internal consistency of patient and staff IPOS was assessed using Cronbach's alpha (α). Intraclass correlation coefficient (ICC) was used to assess test-retest reliability of patient IPOS and inter-rater reliability between patient and staff IPOS. Results: Ninety-one patients and 12 staff participated. There was strong convergent validity of total patient IPOS with MLHF (r = 0.78) and ESAS (r = 0.81). There were statistically significant differences in total IPOS across care settings (patient-IPOS: 8.05, staff-IPOS 13.61) and NYHA (patient-IPOS: 7.52, staff-IPOS 12.71).There was high internal consistency of total patient (α = 0.83) and staff IPOS (α = 0.88) and high test-retest reliability of patient IPOS (ICC 0.81). Inter-rater reliability (ICC) ranged between 0.82 and 0.91. Conclusion: The IPOS was valid and reliable for HF patients in Singapore.

Primary palliative care in Japan: needs estimation and projections - national database study with international comparisons.

OBJECTIVES: We aimed to estimate the potential population that requires palliative care, clarify the relationship between this population and the rate of ageing in Japan, and compare these trends with those of other countries. DESIGN: We used the national death registration data and population projections for Japan to estimate the population in need of palliative care using the minimal estimate method developed by Murtagh et al. Linear regression was used to create a model of mortality using sex, age at intervals of 5 years, and each major disease classification. We calculated the future population in need of palliative care until 2040 and compared the ageing data to those of other countries. SETTING/PARTICIPANTS: All adults in Japan who died from 1980 to 2040 at intervals of 5 years. RESULTS: The number of people who might need palliative care from 2020 to 2040 will also increase linearly from 1 059 000 to 1 405 000. The proportion of Alzheimer's, dementia and senility of the total need for palliative care will increase to 43.4% in 2040. The correlation coefficient between the proportion of the population in need of palliative care and the rate of ageing was 0.24 in developed countries. CONCLUSION: In Japan, the population requiring palliative care in 2040 will be 1.5 times that in 2015. Palliative care needs to be provided urgently for people with Alzheimer's disease, dementia and senility. The proportion of patients in need of palliative care may not change, although the number of patients requiring such gradually increases in developed countries.

Symptom management in people dying with COVID-19: multinational observational study.

OBJECTIVES: To describe multinational prescribing practices by palliative care services for symptom management in patients dying with COVID-19 and the perceived effectiveness of medicines. METHODS: We surveyed specialist palliative care services, contacted via relevant organisations between April and July 2020. Descriptive statistics for categorical variables were expressed as counts and percentages. Content analysis explored free text responses about symptom management in COVID-19. Medicines were classified using British National Formulary categories. Perceptions on effectiveness of medicines were grouped into five categories; effective, some, limited or unclear effectiveness, no effect. RESULTS: 458 services responded; 277 UK, 85 rest of Europe, 95 rest of the world, 1 missing country. 358 services had managed patients with confirmed or suspected COVID-19. 289 services had protocols for symptom management in COVID-19. Services tended to prescribe medicines for symptom control comparable to medicines used in people without COVID-19; mainly opioids and benzodiazepines for breathlessness, benzodiazepines and antipsychotics for agitation, opioids and cough linctus for cough, paracetamol and non-steroidal anti-inflammatory drugs for fever, and opioids and paracetamol for pain. Medicines were considered to be mostly effective but varied by patient's condition, route of administration and dose. CONCLUSIONS: Services were largely consistent in prescribing for symptom management in people dying with COVID-19. Medicines used prior to COVID-19 were mostly considered effective in controlling common symptoms.

Achieving child-centred care for children and young people with life-limiting and life-threatening conditions-a qualitative interview study.

This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, other concerns, and care priorities of children and young people with life limiting and life-threatening conditions and their families. Participants were recruited from six hospitals and three children's hospices in the UK. Verbatim transcripts were analysed using framework analysis. A total of 106 participants were recruited: 26 children (5-17 years), 40 parents (of children 0-17 years), 13 siblings (5-17 years), 15 health and social care professionals, 12 commissioners. Participants described many inter-related symptoms, concerns, and care priorities impacting on all aspects of life. Burdensome symptoms included pain and seizures. Participants spoke of the emotional and social impacts of living with life-limiting conditions, such as being able to see friends, and accessing education and psychological support. Spiritual/existential concerns included the meaning of illness and planning for an uncertain future. Data revealed an overarching theme of pursuing 'normality', described as children's desire to undertake usual childhood activities. Parents need support with practical aspects of care to help realise this desire for normality. CONCLUSION: Children with life-limiting conditions and their families experience a wide range of inter-related symptoms, concerns, and care priorities. A holistic, child-centred approach to care is needed, allowing focus on pursuit of normal childhood activities. Improvements in accessibility, co-ordination, and availability of health services are required to achieve this. WHAT IS KNOWN: • Existing evidence regarding symptoms, concerns, and care priorities for children with life-limiting conditions is largely limited to proxy-reported data and those with a cancer diagnosis. • Child-centred care provision must be directed by children's perspectives on their priorities for care. WHAT IS NEW: • Social and educational activities are more important to children with life-limiting conditions than their medical concerns. • A holistic approach to care is required that extends beyond addressing medical needs, in order to support children with life-limiting conditions to focus on pursuit of normal childhood activities.

Are nurse`s needs assessment methods robust enough to recognise palliative care needs in people with dementia? A scoping review.

BACKGROUND: People with dementia are most at risk of experiencing serious health related suffering, if they do not have a palliative care approach introduced early enough in the illness. It can be challenging for nurses to assess experienced needs of people, who are thought no longer able to self-report such as people with dementia. Assessment help to understand the care the patient and their family need promptly. It is unknown how nurses recognise holistic palliative care needs in people with dementia during routine care. METHODS: Scoping review where EMBASE, MEDLINE, CINAHL, PsycInfo databases, and references were searched with an advanced search strategy, which was built on three concepts (nurses, dementia, and nursing assessment) using corresponding Medical Subject Headings. Data were charted in a piloted extraction form, based on the assessment domains within the nursing process followed by summarise and synthesise results narratively. RESULTS: 37 out of 2,028 qualitative and quantitative articles published between 2000 and 2021, and relating to 2600 + nurses, were identified. Pain was sole focus of assessment in 29 articles, leaving 8 articles to describe assessment of additional needs (e.g., discomfort). Nurses working in a nursing home assess pain and other needs by observing the persons with dementia behaviour during routine care. Nurses in the acute care setting are more likely to assess symptoms with standard assessment tools at admission and evaluate symptoms by observational methods. Across settings, about one third of pain assessments are supported by person-centred pain assessment tools. Assessments were mostly triggered when the person with dementia vocalised discomfort or a change in usual behaviour was observed. Nurses rely on family members and colleagues to gain more information about needs experienced by people with dementia. CONCLUSION: There is a scarcity of evidence about techniques and methods used by nurses to assess needs other than pain experienced by people with dementia. A holistic, person-centred screening tool to aid real-time observations at the bedside and used in conversations with health care professionals and families/friends, may improve need recognition other than pain, to ensure holistic needs could then be addressed timely to improve care in people with dementia.

Symptom Control and Survival for People Severely ill With COVID: A Multicentre Cohort Study (CovPall-Symptom).

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.

Symptom burden and lived experiences of patients, caregivers and healthcare professionals on the management of malignant bowel obstruction: A qualitative systematic review.

BACKGROUND: Malignant bowel obstruction occurs in up to 50% of people with advanced ovarian and 15% of people with gastrointestinal cancers. Evaluation and comparison of interventions to manage symptoms are hampered by inconsistent evaluations of efficacy and lack of agreed core outcomes. The patient perspective is rarely incorporated. AIM: To synthesise the qualitative data regarding patient, caregiver and healthcare professionals' views and experience of malignant bowel obstruction to inform the development of a core outcome set for the evaluation of malignant bowel obstruction. DESIGN: A qualitative systematic review was conducted, with narrative synthesis. The review protocol was registered prospectively (https://www.crd.york.ac.uk/prospero, CRD42020176393). DATA SOURCES: MEDLINE, EMBASE, CINAHL, PsycINFO and Scopus databases were searched for studies published between 2010 and 2021. Reference lists were screened for further relevant publications, and citation tracking was performed. RESULTS: Nine papers were included, reporting on seven studies which described the views and experiences of malignant bowel obstruction through the perspectives of 75 patients, 13 caregivers and 62 healthcare professionals. Themes across the papers included symptom burden, diverse experiences of interventions, impact on patient quality of life, implications and trajectory of malignant bowel obstruction, mixed experience of communication and the importance of realistic goals of care. CONCLUSION: Some of the most devastating sequelae of malignant bowel obstruction, such as pain and psychological distress, are not included routinely in its clinical or research evaluation. These data will contribute to a wider body of work to ensure the patient and caregiver perspective is recognised in the development of a core outcome set.

Conceptualising effective symptom management in palliative care: a novel model derived from qualitative data.

BACKGROUND: Pain, breathlessness and fatigue are some of the most challenging symptoms to manage in patients with advanced disease. Specialist palliative care leads to better symptom management, but factors contributing to successful symptom management in this context have not been explored. Our aim was to understand what facilitates effective symptom management in specialist palliative care within UK hospices and investigate what barriers are experienced. METHODS: This was a grounded theory study using qualitative semi-structured focus groups and interviews. Participants were recruited from multidisciplinary specialist palliative care teams (doctors, nurses, healthcare assistants, physiotherapists, occupational therapists, complementary therapists, social workers and chaplains) working in inpatient, outpatient and community services provided by five hospices in the United Kingdom. RESULTS: We present a novel qualitative data-derived model of effective symptom management in specialist palliative care. We describe a co-ordinated, multi-faceted, sequential approach involving a process of engagement, partnership, decision-making, and delivery. Interventions to manage symptoms are less effective in psychologically distressed patients. Our data highlights that families of patients have a key role in determining effectiveness of symptom management interventions A holistic approach by a co-ordinated, multi-disciplinary team, including support to recognise and minimise psychological distress might facilitate more effective symptom management. Barriers to symptom management include team discordance and lack of understanding about symptom management by patient and families. CONCLUSIONS: Shared decision-making between patients and professionals and co-ordination of care by a multi-disciplinary team are key components of effective symptom management. Actions to address psychological distress and evaluate the understanding and expectations of patients and their families would enable more effective symptom management. A more effective multi-disciplinary approach would be facilitated by discussion within teams about role competencies and boundaries.

Concurrent Validity and Prognostic Utility of the Needs Assessment Tool: Progressive Disease Heart Failure.

CONTEXT: People with advanced heart failure have supportive and palliative needs requiring systematic assessment. OBJECTIVES: We aimed to assess the validity of the Needs Assessment Tool: Progressive Disease - Heart Failure (NAT:PD-HF). METHODS: Secondary analysis of routinely collected patient data from a specialist palliative care-heart disease service improvement project. NAT:PD-HF, the Integrated Palliative care Outcome Scale (IPOS), and patient and/or carer-report data were collected. Concurrent validity between NAT:PD-HF items and comparison measures (Kendall's tau; kappa); construct validity via known-group comparisons; predictive utility of NAT:PD-HF for survival (multivariable Cox hazard regression model). RESULTS: Data from 88 patients (50% men; mean age 85; median survival 205 days; 64% left ventricular systolic dysfunction) were analyzed. Prevalence- and bias-adjusted kappa values indicated moderate agreement for physical symptom needs (k: 0.33 for patients, 0.42 for carers). Substantial agreement was observed for patient and/or carer psychological symptoms, and information needs (k ≥ 0.6). NAT:PD-HF distinguished between patients with different survival, comorbidities, functional scores, and palliative Phase of Illness with moderate to high effect sizes. NAT did not predict survival when adjusted for mortality risk score and functional status (2+ needs HR: 1.52, 95% CI: 1.01-1.74). CONCLUSION: The NAT:PD-HF is a valid tool for clinician assessment of physical, psychosocial, and information patient and/or carer needs.

Change in Activity of Palliative Care Services during the Covid-19 Pandemic: A Multinational Survey (CovPall).

Objectives: To identify factors associated with palliative care services being busier during Covid-19. Methods: Cross-sectional online survey of UK palliative care services (April to July 2020) (CovPall). Ethical approval was received from King's College London Research Ethics committee (LRS-19/20-18541). The primary outcome was change in busyness (five-point ordinal scale). Ordinal logistic regression investigated factors associated with the primary outcome. Results: Of 277 responses, 71 (26%) reported being a lot more busy, 62 (22%) slightly more, 53 (19%) about the same, 50 (18%) slightly less, and 28 (10%) much less busy. Increased business was associated with homecare services (odds ratio [OR] 1.93, 95% confidence interval [CI] 1.15-3.25), nursing care at home (OR 3.24, 95% CI 1.70-6.19), publicly managed services (OR 2.20, 95% CI 1.11-4.34), Covid-19 cases (OR 1.01, 95% CI 1.00-1.01), and staff shortages (OR 2.71, 95% CI 1.64-4.48). Conclusion: Services providing community care, and publicly managed services, may have been better able to respond to escalating needs during Covid-19. This has potential implications for both service delivery and funding models.