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Background: Deaths in the community are increasing. However, community palliative care out-of-hours is variable. We lack detailed understanding of how care is provided out-of-hours and the associated outcomes. Aim: To review systematically the components, outcomes and economic evaluation of community-based ‘out-of-hours’ care for patients near the end of life and their families. Design: Mixed method systematic narrative review. Narrative synthesis, development and application of a typology to categorise out-of-hours provision. Qualitative data were synthesised thematically and integrated at the level of interpretation and reporting. Data sources: Systematic review searching; MEDLINE, EMBASE, PsycINFO, CINAHL from January 1990 to 1st August 2022. Results: About 64 publications from 54 studies were synthesised (from 9259 retrieved). Two main themes were identified: (1) importance of being known to a service and (2) high-quality coordination of care. A typology of out-of-hours service provision was constructed using three overarching dimensions (service times, focus of team delivering the care and type of care delivered) resulting in 15 categories of care. Only nine papers were randomised control trials or controlled cohorts reporting outcomes. Evidence on effectiveness was apparent for providing 24/7 specialist palliative care with both hands-on clinical care and advisory care. Only nine publications reported economic evaluation. Conclusions: The typological framework allows models of out-of-hours care to be systematically defined and compared. We highlight the models of out-of-hours care which are linked with improvement of patient outcomes. There is a need for effectiveness and cost effectiveness studies which define and categorise out-of-hours care to allow thorough evaluation of services.

Background Independent charitably funded hospices have been an important element of the UK healthcare response to the COVID-19 pandemic. Hospices usually have different funding streams, procurement processes, and governance arrangements compared to NHS provision, which may affect their experiences during the COVID-19 pandemic. The aim of this study is to understand the challenges faced by charitably funded hospices during the COVID-19 pandemic. Methods Eligible Organisations providing specialist palliative or hospice care completed the online CovPall survey (2020) which explored their response to the COVID-19 pandemic. Eligible organisations were then purposively selected to participate in interviews as part of qualitative case studies (2020-21) to understand challenges in more depth. Free-text responses from the survey were analysed using content analysis and were categorised accordingly. These categorisations were used a priori for a reflexive thematic analysis of interview data. Results 143 UK independent charitably funded hospices completed the online CovPall survey. Five hospices subsequently participated in qualitative case studies (n = 24 staff interviews). Key themes include: vulnerabilities of funding; infection control during patient care; and bereavement support provision. Interviewees discussed the fragility of income due to fundraising events stopping; the difficulties of providing care to COVID-19 and non-COVID-19 patients within relatively small organisations; and challenges with maintaining the quality of bereavement services. Conclusion Some unique care and provision challenges during the COVID-19 pandemic were highlighted by charitably funded hospices. Funding core services charitably and independently may affect their ability to respond to pandemics, or scenarios where resources are unexpectedly insufficient.

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

Background: The Children’s Palliative Care Outcome Scale (C-POS) is the first measure developed for children with life-limiting and -threatening illness. It is essential to determine whether the measure addresses what matters to children, and if they can comprehend and respond to its items. Aim: To determine the face and content validity, comprehensiveness, comprehensibility, acceptability and feasibility, and implementability of the C-POS. Design: Mixed methods (1) Content validation: mapping C-POS items onto an evidence-based framework from prior evidence; (2) Comprehensiveness, comprehensibility, acceptability feasibility, and implementability: qualitative in-depth and cognitive interviews with a purposive sample of children and young people ( n = 6), family caregivers ( n = 16), and health workers ( n = 12) recruited from tertiary facilities in Kenya, South Africa, and Uganda. Results: (1) C-POS content mapped on to palliative care domains for (a) children (i.e. physical (e.g. symptoms), social (e.g. play/socialize), psychological (e.g. happy)) and (b) families (i.e. psychological (e.g. worry), social (e.g. information), and help and advice). (2) C-POS items were well understood by children and their caregivers, acceptable, and relevant. Completion time was a median of 10 min, patients/caregivers and health workers reported that using the C-POS improved their communication with children and young people. Methodological and content issues included: (i) conceptual gap in the spiritual/existential domain; (ii) further consideration of developmental, age-appropriate items in the social and psychological domains, and (iii) linguistic complexity and difficulty in proxy rating. Conclusion: C-POS items capture the core symptoms and concerns that matter to children and their families. C-POS is feasible, comprehensible, and acceptable for use in clinical settings; areas for further development and improvement are identified.

Background: Community services for palliative patients outside normal working hours are variable and the best evidence-based models of care have not been determined. Aim: To establish expert consensus on the most important components of out-of-hours community palliative care services. Design: Delphi study. The first round listed 68 components generated from systematic literature reviewing, focus groups with healthcare professionals and input from the project’s patient and public involvement advisory group. The components deemed ‘essential’ by over 70% of participants in the first round were refined and carried forward to a second round, asking participants to rank each on a five-point Likert scale (5 highest to 1 lowest). The consensus threshold was median of 4 to 5 and interquartile range of ⩽1. Participants: Community specialist palliative care health professionals, generalist community health professionals and patients and family carers with experience of receiving care out-of-hours at home. Results: Fifty-four participants completed round 1, and 44 round 2. Forty-five components met the threshold as most important for providing out-of-hours care, with highest consensus for: prescription, delivery and administration of medicines; district and community nurse visits; and shared electronic patient records and advance care plans. Conclusions: The Delphi method identified the most important components to provide community palliative care for patients out-of-hours, which are often provided by non-specialist palliative care professionals. The importance placed on the integration and co-ordination with specialist palliative care through shared electronic records and advance care plans demonstrates the reassurance for patients and families of being known to out-of-hours services.

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

Background: Malignant bowel obstruction, a complication of certain advanced cancers, causes severe symptoms which profoundly affect quality of life. Clinical management remains complex, and outcome assessment is inconsistent. Aim: To identify outcomes evaluating palliative treatment for inoperable malignant bowel obstruction, as part of a four-phase study developing a core outcome set. Design: The review is reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA); PROSPERO (ID: CRD42019150648). Eligible studies included at least one subgroup with obstruction below the ligament of Treitz undergoing palliative treatment for inoperable malignant bowel obstruction. Study quality was not assessed because the review does not evaluate efficacy. Data sources: Medline, Embase, the Cochrane Database, CINAHL, PSYCinfo Caresearch, Open Grey and BASE were searched for trials and observational studies in October 2021. Results: A total of 4769 studies were screened, 290 full texts retrieved and 80 (13,898 participants) included in a narrative synthesis; 343 outcomes were extracted verbatim and pooled into 90 unique terms across six domains: physiological, nutrition, life impact, resource use, mortality and survival. Prevalent outcomes included adverse events (78% of studies), survival (54%), symptom control (39%) and mortality (31%). Key individual symptoms assessed were vomiting (41% of studies), nausea (34%) and pain (33%); 19% of studies assessed quality of life. Conclusions: Assessment focuses on survival, complications and overall symptom control. There is a need for definitions of treatment ‘success’ that are meaningful to patients, a more consistent approach to symptom assessment, and greater consideration of how to measure wellbeing in this population.