Benefits of specialist palliative care by identifying active ingredients of service composition, structure, and delivery model: A systematic review with meta-analysis and meta-regression.

BACKGROUND: Specialist palliative care (SPC) services address the needs of people with advanced illness. Meta-analyses to date have been challenged by heterogeneity in SPC service models and outcome measures and have failed to produce an overall effect. The best service models are unknown. We aimed to estimate the summary effect of SPC across settings on quality of life and emotional wellbeing and identify the optimum service delivery model. METHODS AND FINDINGS: We conducted a systematic review with meta-analysis and meta-regression. Databases (Cochrane, MEDLINE, CINAHL, ICTRP, clinicaltrials.gov) were searched (January 1, 2000; December 28, 2023), supplemented with further hand searches (i.e., conference abstracts). Two researchers independently screened identified studies. We included randomized controlled trials (RCTs) testing SPC intervention versus usual care in adults with life-limiting disease and including patient or proxy reported outcomes as primary or secondary endpoints. The meta-analysis used, to our knowledge, novel methodology to convert outcomes into minimally clinically important difference (MID) units and the number needed to treat (NNT). Bias/quality was assessed via the Cochrane Risk of Bias 2 tool and certainty of evidence was assessed using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) tool. Random-effects meta-analyses and meta-regressions were used to synthesize endpoints between 2 weeks and 12 months for effect on quality of life and emotional wellbeing expressed and combined in units of MID. From 42,787 records, 39 international RCTs (n = 38 from high- and middle-income countries) were included. For quality of life (33 trials) and emotional wellbeing (22 trials), statistically and clinically significant benefit was seen from 3 months' follow-up for quality of life, standardized mean difference (SMD in MID units) effect size of 0.40 at 13 to 36 weeks, 95% confidence interval (CI) [0.21, 0.59], p < 0.001, I2 = 60%). For quality of life at 13 to 36 weeks, 13% of the SPC intervention group experienced an effect of at least 1 MID unit change (relative risk (RR) = 1.13, 95% CI [1.06, 1.20], p < 0.001, I2 = 0%). For emotional wellbeing, 16% experienced an effect of at least 1 MID unit change at 13 to 36 weeks (95% CI [1.08, 1.24], p < 0.001, I2 = 0%). For quality of life, the NNT improved from 69 to 15; for emotional wellbeing from 46 to 28, from 2 weeks and 3 months, respectively. Higher effect sizes were associated with multidisciplinary and multicomponent interventions, across settings. Sensitivity analyses using robust MID estimates showed substantial (quality of life) and moderate (emotional wellbeing) benefits, and lower number-needed-to-treat, even with shorter follow-up. As the main limitation, MID effect sizes may be biased by relying on derivation in non-palliative care samples. CONCLUSIONS: Using, to our knowledge, novel methods to combine different outcomes, we found clear evidence of moderate overall effect size for both quality of life and emotional wellbeing benefits from SPC, regardless of underlying condition, with multidisciplinary, multicomponent, and multi-setting models being most effective. Our data seriously challenge the current practice of referral to SPC close to death. Policy and service commissioning should drive needs-based referral at least 3 to 6 months before death as the optimal standard of care.

Creating more comparable cohorts in observational palliative care studies: A proposed framework to improve applicability and replicability of research.

BACKGROUND: Palliative care is characterised by heterogeneous patient and caregiver populations who are provided care in different health systems and a research base including a large proportion of observational, mostly retrospective studies. The inherent diversity of palliative care populations and the often inadequate study descriptions challenge the application of new knowledge into practice and reproducibility for confirmatory studies. Being able to define systematically study populations would significantly increase their generalisability and effective translation into practice. PROPOSAL: Based on an informal consensus process by active palliative care researchers challenged by this problem and a review of the current evidence, we propose an approach to creating more comparable cohorts in observational (non-randomised) palliative care studies that relies on defining the study population in relation to a fixed, well-defined event from which analyses are built ('anchoring'). In addition to providing a detailed and complete description of the study population, anchoring is the critical step in creating more comparable cohorts in observational palliative care studies. Anchoring can be done with respect to a single or multiple data points, and can support both prospective and retrospective data collection and analysis. DISCUSSION: Anchoring the cohort to reproducible data points will help create more comparable cohorts in palliative care whilst mitigating its inherent heterogeneity. This, in turn, will help optimise the generalisability, applicability and reproducibility of observational palliative care studies to strengthen the evidence base and improve practice.

What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders.

BACKGROUND: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited. AIM: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions. DESIGN: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research. SETTING/PARTICIPANTS: A total of n = 26 children with life-limiting or life-threatening conditions, n = 40 parents/carers, n = 13 siblings and n = 15 health and social care professionals recruited from six hospitals and three children's hospices and n = 12 Commissioners of health services. RESULTS: All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage 'buy-in' and administering measures with known and trusted professional. CONCLUSIONS: Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation.

'My life is a mess but I cope': An analysis of the language children and young people use to describe their own life-limiting or life-threatening condition.

BACKGROUND: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each individual child. AIM: To explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities. DESIGN: Positioned within a social constructivist paradigm, a secondary discourse analysis of semi-structured interview data was conducted incorporating the discourse dynamics approach for figurative language. SETTING/PARTICIPANTS: A total of 26 children and young people aged 5-17 years with life-limiting or life-threatening conditions (6 cancer; 20 non-cancer) were recruited from nine clinical services (six hospitals and three hospices) across two UK nations. RESULTS: The language children and young people use positions them as 'experts in their condition'. They combine medical terminology with their preferred terms for their body to describe symptoms and treatments, and use comparatives and superlatives to communicate their health status. Their language depicts their condition as a 'series of (functional and social) losses', which single them out from their peers as 'the sick one'. Older children and young people also incorporate figurative language to expand their descriptions. CONCLUSION/DISCUSSION: Children and young people can provide rich descriptions of their condition. Paying attention to their lexical choices, and converging one's language towards theirs, may enable more child-centred discussions. Expanding discussions about 'what matters most' with consideration of the losses and differences they have experienced may facilitate a fuller assessment of their concerns, preferences and priorities.

Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carers.

BACKGROUND: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing. AIM: To cognitively test C-POS within the target population to establish comprehensibility, comprehensiveness, relevance and acceptability. DESIGN: Cross-sectional cognitive interview study following COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology and Rothrock guidance on outcome measure development. Cognitive interviews were conducted using 'think aloud' and verbal probing techniques. SETTING/PARTICIPANTS: Children 5-⩽17 years old with life-limiting conditions and parents/carers of children with life-limiting conditions were recruited from 14 UK sites. RESULTS: Forty-eight individuals participated (36 parents; 12 children) in cognitively testing the five versions of C-POS over two to seven rounds. Content and length were acceptable, and all questions were considered important. Refinements were made to parent/carer versions to be inclusive of non-verbal children such as changing 'share' to 'express' feelings; and 'being able to ask questions' to 'having the appropriate information'. Changes to improve comprehensibility of items such as 'living life to the fullest' were also made. Parents reported that completing an outcome measure can be distressing but this is anticipated and that being asked is important. CONCLUSION: Cognitive interviewing has facilitated refinement of the C-POS, especially for non-verbal children who represent a large proportion of those with a life-limiting condition. This study has enhanced the face and content validity of the measure and provided preliminary evidence for acceptability for use in routine practice.

Telephone advice lines for adults with advanced illness and their family carers: a qualitative analysis and novel practical framework.

BACKGROUND: Telephone advice lines have been recommended internationally to support around-the-clock care for people living at home with advanced illness. While they undoubtedly support care, there is little evidence about what elements are needed for success. A national picture is needed to understand, improve and standardise service delivery/care. AIM: To explore telephone advice lines for people living at home with advanced illness across the four UK nations, and to construct a practical framework to improve services. DESIGN: A cross-national evaluation of telephone advice lines using structured qualitative interviews. A patient and public involvement workshop was conducted to refine the framework. SETTING/PARTICIPANTS: Professionals with responsibilities for how palliative care services are delivered and/or funded at a local or regional level, were purposively sampled. RESULTS: Seventy-one interviews were conducted, covering 60 geographical areas. Five themes were identified. Availability: Ten advice line models were described. Variation led to confusion about who to call and when. Accessibility, awareness and promotion: It was assumed that patients/carers know who to call out-of-hours, but often they did not. Practicalities: Call handlers skills/expertise varied, which influenced how calls were managed. Possible responses ranged from signposting to organising home visits. Integration/continuity of care: Integration between care providers was limited by electronic medical records access/information sharing. Service structure/commissioning: Sustained funding was often an issue for charitably funded organisations. CONCLUSIONS: Our novel evidence-based practical framework could be transformative for service design/delivery, as it presents key considerations relating to the various elements of advice lines that may impact on the patient/carer experience.

The effectiveness of out-of-hours palliative care telephone advice lines: A rapid systematic review.

BACKGROUND: People with palliative care needs and their carers often rely on out-of-hours services to remain at home. Policymakers have recommended implementing telephone advice lines to ensure 24/7 access to support. However, the impact of these services on patient and carer outcomes, as well as the health care system, remains poorly understood. AIM: To evaluate the clinical- and cost-effectiveness of out-of-hours palliative care telephone advice lines, and to identify service characteristics associated with effectiveness. DESIGN: Rapid systematic review (PROSPERO ID: CRD42023400370) with narrative synthesis. DATA SOURCES: Three databases (Medline, EMBASE and CINAHL) were searched in February 2023 for studies of any design reporting on telephone advice lines with at least partial out-of-hours availability. Study quality was assessed using the Mixed Methods Appraisal Tool, and quantitative and qualitative data were synthesised narratively. RESULTS: Twenty-one studies, published 2000-2022, were included. Most studies were observational, none were experimental. While some evidence suggested that telephone advice lines offer guidance and reassurance, supporting care at home and potentially reducing avoidable emergency care use in the last months of life, variability in reporting and poor methodological quality across studies limit our understanding of patient/carer and health care system outcomes. CONCLUSION: Despite their increasing use, evidence for the clinical- and cost-effectiveness of palliative care telephone advice lines remains limited, primarily due to the lack of robust comparative studies. There is a need for more rigorous evaluations incorporating experimental or quasi-experimental methods and longer follow-up, and standardised reporting of telephone advice line models and outcomes, to guide policy and practice.

'There's never really been an opportunity': perspectives of those with long-term conditions on advance care planning, a qualitative interview study in primary care.

BACKGROUND: Advance care planning (ACP), the process of discussing and documenting people's wishes for future care, is increasingly researched within health and social care. However, it is sometimes assumed that ACP is only for those experiencing advanced cancer or those reaching the end of life. Little is known about how those living with other major conditions perceive ACP. AIM: To explore attitudes towards ACP in this population. METHOD: In-depth interview study in general practice. INCLUSION CRITERIA: adults living with major conditions other than cancer (diabetes, heart disease, chronic respiratory disease, and kidney disease). Interviews were conducted face-to-face, audio-recorded, and transcribed verbatim. Thematic analysis utilised a critical realist approach, underpinned by the COM-B Behaviour Change Model. NHS ethics approval (reference: 23/PR/0078). RESULTS: Eleven participants have been recruited (recruitment ongoing): aged 61-88 years, five males, and Rockwood Frailty Scores 1-5. Emergent COM-B themes relate to capability (wellbeing, organisational skills, and understanding); opportunity (setting, time, trust, involving others, and the 'right' moment); and motivation (motivating factors: helping loved ones, helping professionals, fearing undesirable outcomes, desiring a peaceful death, being organised, and valuing autonomy; and demotivating factors: trusting others with decisions, uncertainty regarding the future, distrusting health care, focusing on the present, and values-based objections). ACP is understood in three ways: as proactive planning, as anticipatory planning, and as acknowledgment of ill-health and mortality. Context influences understanding and understanding influences motivation. There is openness to discussing ACP as part of proactive care. CONCLUSION: Normalising ACP before ill-health may reduce distress. Public health campaigns and preventative healthcare consultations present opportunities for ACP signposting.

Destitute and dying: interventions and models of palliative and end of life care for homeless adults - a systematic review.

BACKGROUND: Homeless adults experience a significant symptom burden when living with a life-limiting illness and nearing the end of life. This increases the inequalities that homeless adults face while coping with a loss of rootedness in the world. There is a lack of palliative and end of life care provision specifically adapted to meet their needs, exacerbating their illness and worsening the quality of their remaining life. AIM: To identify interventions and models of care used to address the palliative and end of life care needs of homeless adults, and to determine their effectiveness. METHODS: Standard systematic reviewing methods were followed, searching from 1 January 2000 the databases: Ovid MEDLINE, EMBASE, SCOPUS, Web of Science, CINAHL and PsycInfo. Results were reported following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and described using a narrative synthesis. Study quality was assessed using Hawker's Quality Assessment Tool. RESULTS: Nine studies primarily focused on: education and palliative training for support staff; advance care planning; a social model for hospice care; and the creation of new roles to provide extra support to homeless adults through health navigators, homeless champions or palliative outreach teams. The voices of those experiencing homelessness were rarely included. CONCLUSION: We identified key components of care to optimise the support for homeless adults needing palliative and end of life care: advocacy; multidisciplinary working; professional education; and care in the community. Future research must include the perspectives of those who are homeless.

Understanding and addressing symptoms for those with kidney failure managed conservatively, without dialysis: considerations and models of care.

For those who have kidney failure and are managed conservatively without dialysis, symptoms are often prevalent, multiple, and troublesome. They interfere with quality of life, reduce wellbeing, and can affect family carers too. Symptoms can sometimes be difficult to manage, and-for professionals-they are often hard to assess and not always amenable to management with medications appropriate for use in kidney failure. Fatigue is one of the most common symptoms; alongside a general overview of symptoms in this population, we include a more detailed discussion of this often-neglected symptom. The solutions to the main symptoms experienced by those with kidney failure managed conservatively without dialysis lie in detailed assessment and monitoring of symptoms, working as a multi-disciplinary team to the maximum to draw on the full range of skills and expertise, and use of non-pharmacological, as well as pharmacological, approaches. Both nephrology and palliative care skills and expertise are important to optimise the recognition, assessment, and management of symptoms. There are few published descriptions of models of conservative kidney management (CKM) or supportive kidney care and there is a lack of evidence to suggest which model is most effective. We therefore consider the evidence on optimal models of CKM and make suggestions for best practice.

Breathlessness assessment, management and impact in the intensive care unit: a rapid review and narrative synthesis.

BACKGROUND: Adults in the intensive care unit (ICU) commonly experience distressing symptoms and other concerns such as pain, delirium, and breathlessness. Breathlessness management is not supported by any ICU guidelines, unlike other symptoms. AIM: To review the literature relating to (i) prevalence, intensity, assessment, and management of breathlessness in critically ill adults in the ICU receiving invasive and non-invasive mechanical ventilation (NIV) and high-flow oxygen therapy, (HFOT), (ii) the impact of breathlessness on ICU patients with regard to engagement with rehabilitation. METHODS: A rapid review and narrative synthesis using the Cochrane Methods Group Recommendations was conducted and reported in accordance with PRISMA. All study designs investigating breathlessness in adult ICU patients receiving either invasive mechanical ventilation (IMV), NIV or HFOT were eligible. PubMed, MEDLINE, The Cochrane Library and CINAHL databased were searched from June 2013 to June 2023. Studies were quality appraised. RESULTS: 19 studies representing 2822 ICU patients were included (participants mean age 48 years to 71 years; proportion of males 43-100%). The weighted mean prevalence of breathlessness in ICU patients receiving IMV was 49% (range 34-66%). The proportion of patients receiving NIV self-reporting moderate to severe dyspnoea was 55% prior to initiation. Breathlessness assessment tools included visual analogue scale, (VAS), numerical rating scale, (NRS) and modified BORG scale, (mBORG). In patients receiving NIV the highest reported median (interquartile range [IQR]) VAS, NRS and mBORG scores were 6.2cm (0-10 cm), 5 (2-7) and 6 (2.3-7) respectively (moderate to severe breathlessness). In patients receiving either NIV or HFOT the highest reported median (IQR) VAS, NRS and mBORG scores were 3 cm (0-6 cm), 8 (5-10) and 4 (3-5) respectively. CONCLUSION: Breathlessness in adults receiving IMV, NIV or HFOT in the ICU is prevalent and clinically important with median intensity ratings indicating the presence of moderate to severe symptoms.

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).