European Respiratory Society clinical practice guideline on symptom management for adults with serious respiratory illness.

Respiratory symptoms are ubiquitous and impair health-related quality of life in people with respiratory disease. This European Respiratory Society (ERS) task force aimed to provide recommendations for symptomatic treatment in people with serious respiratory illness. The ERS task force comprised 16 members, including representatives of people with serious respiratory illness and informal caregivers. Seven questions were formulated, six in the PICO (Population, Intervention, Comparison, Outcome) format, which were addressed with full systematic reviews and evidence assessed using GRADE (Grading of Recommendations Assessment, Development and Evaluation). One question was addressed narratively. An "evidence-to-decision" framework was used to formulate recommendations. To treat symptoms in people with serious respiratory illness, the task force suggests the use of graded exercise therapy (conditional recommendation, low certainty of evidence); and suggests the use of a multicomponent services, handheld fan and breathing techniques (conditional recommendations, very low certainty of evidence). The task force suggests not to use opioids (conditional recommendation, very low certainty of evidence); and suggests either administering or not administering supplemental oxygen therapy (conditional recommendation, low certainty of evidence). The task force suggests that needs assessment tools may be used as part of a comprehensive needs assessment, but do not replace patient-centred care and shared decision making (conditional recommendation, low certainty of evidence). The low certainty of evidence, modest impact of interventions on patient-centred outcomes, and absence of effective strategies to ameliorate cough highlight the need for new approaches to reduce symptoms and enhance wellbeing for individuals who live with serious respiratory illness.

Total uncertainty: a systematic review and thematic synthesis of experiences of uncertainty in older people with advanced multimorbidity, their informal carers and health professionals.

OBJECTIVES: uncertainty pervades the complex illness trajectories experienced by older adults with multimorbidity. Uncertainty is experienced by older people, their informal carers and professionals providing care, yet is incompletely understood. We aimed to identify and synthesise systematically the experience of uncertainty in advanced multimorbidity from patient, carer and professional perspectives. DESIGN: systematic literature review of published and grey qualitative literature from 9 databases (Prospero CRD 42021227480). PARTICIPANTS: older people with advanced multimorbidity, and informal carers/professionals providing care to this group. Exclusion criteria: early multimorbidity, insufficient focus on uncertainty. ANALYSIS: weight-of-evidence assessment was used to appraise included articles. We undertook thematic synthesis of multi-perspective experiences and response to uncertainty. RESULTS: from 4,738 unique search results, we included 44 articles relating to 40 studies. 22 focused on patient experiences of uncertainty (n = 460), 15 on carer experiences (n = 197), and 19 on health professional experiences (n = 490), with 10 exploring multiple perspectives. We identified a shared experience of 'Total Uncertainty' across five domains: 'appraising and managing multiple illnesses'; 'fragmented care and communication'; 'feeling overwhelmed'; 'uncertainty of others' and 'continual change'. Participants responded to uncertainty by either active (addressing, avoiding) or passive (accepting) means. CONCLUSIONS: the novel concept of 'Total Uncertainty' represents a step change in our understanding of illness experience in advanced multimorbidity. Patients, carers and health professionals experienced uncertainty in similar domains, suggesting a shared understanding is feasible. The domains of total uncertainty form a useful organising framework for health professionals caring for older adults with multimorbidity.

Medical communication and decision-making about assisted hydration in the last days of life: A qualitative study of doctors experienced with end of life care.

BACKGROUND: The impact of assisted hydration on symptoms and survival at the end of life is unclear. Little is known about optimal strategies for communicating and decision-making about this ethically complex topic. Hydration near end of life is known to be an important topic for family members, but conversations about assisted hydration occur infrequently despite guidance suggesting these should occur with all dying people. AIM: To explore the views and experiences of doctors experienced in end-of-life care regarding communicating with patients and families and making decisions about assisted hydration at the end of life. DESIGN: Qualitative study involving framework analysis of data from semi-structured interviews. SETTING/PARTICIPANTS: Sixteen UK-based Geriatrics and Palliative Medicine doctors were recruited from hospitals, hospices and community services from October 2019 to October 2020. RESULTS: Participants reported clinical, practical and ethical challenges associated with this topic. The hospital setting provides barriers to high-quality communication with dying patients and their families about assisted hydration, which may contribute to the low incidence of documented assisted hydration-related conversations. Workplace culture in some hospices may make truly individualised decision-making about this topic more difficult. Lack of inclusion of patients in decision-making about assisted hydration appears to be common practice. CONCLUSIONS: Proactive, routine discussion with dying people about hydration-related issues is indicated in all cases. There is room for debate regarding the limits of shared decision-making and the benefits of routine discussion of assisted hydration with all dying people. Clinicians have to navigate multiple barriers as they strive to provide individualised care.

Filling the Gap: A Feasibility Study of a COPD-Specific Breathlessness Service.

Refractory breathlessness is a devastating symptom in chronic obstructive pulmonary disease (COPD). Symptom-focused breathlessness services, involving palliative care teams, offer individualized support but are not yet widely available for people with nonmalignant disease among which COPD. Our primary aim was to demonstrate the feasibility of setting up a breathlessness service specifically for COPD patients within a respiratory outpatient clinic. Our secondary aims were to assess how many sessions patients need to complete the intervention; to obtain an indication of effect size (on the Chronic Respiratory Questionnaire (CRQ), subset mastery domain); and to evaluate patient and professional satisfaction. We conducted a non-randomized single-center feasibility study. Participants had COPD and refractory breathlessness. During at least one session with a respiratory nurse and a pulmonologist, and one session with a physiotherapist, patients learned non-pharmacological interventions to manage breathlessness. Of 34 screened patients, 19 were included. All completed the intervention. A median of two clinical visits and two telephone calls were needed to complete the intervention. The mean improvement of 1.55 in CRQ, mastery domain, significantly exceeded the clinically important difference of 0.5. The service was rated as excellent by the eight patients who completed the survey. The health professional team gave positive feedback on the experience of delivering the intervention. Delivery of a breathlessness service for COPD outpatients with refractory breathlessness appears feasible, easy to implement in a respiratory outpatient clinic, and has the potential to be effective. A randomized controlled clinical trial is needed to test effectiveness and cost-effectiveness in this context.

Cancer-related fatigue in teenage and young adult cancer patients: Clinicians' perspectives, practice and challenges.

OBJECTIVE: Cancer-related fatigue (CRF) is a common and distressing symptom experienced by teenage and young adult cancer patients (TYAs). This study aimed to explore clinicians' perspectives, practices and challenges in supporting TYAs with CRF. METHOD: Ten clinicians from a TYA multidisciplinary team (MDT) participated in semi-structured interviews which were thematically analysed. RESULTS: Clinicians perceived CRF as a common, but individual experience for TYAs and framed the broad impact of CRF in the context of TYAs' development. Clinicians' assessment and management of CRF for TYAs varied. Clinicians described a range of challenges affecting their practice in supporting TYAs with CRF, including limited knowledge, difficulties engaging TYAs, inadequate time in consultations and a lack of age-appropriate resources. CONCLUSIONS: Despite clinicians' good insight into TYAs' unique experiences of CRF, the assessment and management of CRF for TYAs are complicated by numerous challenges. The development of evidence-based interventions and guidelines, clear pathways of care, and TYA-friendly resources, measures and programmes, is vital to support clinicians, and TYAs, in managing CRF.

The known unknowns of assisted hydration at the end of life.

Much is unknown about assisted hydration at the end of life: why rates of usage vary so highly between institutions, cultures and countries, what beneficial or burdensome effects this treatment has, whether there is a place for subcutaneous hydration in the home setting, and how best to communicate about this difficult topic with dying people and their families. In light of a recently published systematic review concerning the impact of assisted hydration at the end of life, this article explores these questions and related issues, concluding that individualisation and shared decision-making are essential aspects of high-quality end-of-life care.

Attitude change and increased confidence with management of chronic breathlessness following a health professional training workshop: a survey evaluation.

BACKGROUND: Clinicians and people living with chronic breathlessness have expressed a need to better understand and manage this symptom. The aim of this study was to evaluate a 3-day health professional training workshop on the practical management of chronic breathlessness. METHODS: Workshop design and delivery were based on current understandings and clinical models of chronic breathlessness management, principles of transformative learning, and included sessions co-designed with people living with breathlessness. Registrants were invited to complete pre and post-workshop surveys. Pre and 1-week post-workshop online questionnaires assessed familiarity and confidence about workshop objectives (0[lowest]-10[highest] visual analogue scale), attitudes and practices regarding chronic breathlessness (agreement with statements on 5-point Likert scales). Post-workshop, participants were asked to describe implementation plans and anticipated barriers. Baseline familiarity and confidence were reported as mean (SD) and change examined with paired t-tests. Pre-post attitudes and practices were summarised by frequency/percentages and change examined non-parametrically (5-point Likert scale responses) or using a McNemar test of change (binary responses). RESULTS: Forty-seven of 55 registrants joined the study; 39 completed both pre and post-workshop questionnaires (35 female; 87% clinicians; median 8 years working with people with chronic breathlessness). Post-workshop, greatest gains in confidence were demonstrated for describing biopsychosocial concepts unpinning chronic breathlessness (mean change confidence = 3.2 points; 95% CI 2.7 to 4.0, p < 0.001). Respondents significantly changed their belief toward agreement that people are able to rate their breathlessness intensity on a scale (60 to 81% agreement) although only a minority strongly agreed with this statement at both time points (pre 11%, post 22%). The largest shift in attitude was toward agreement (z statistic 3.74, p < 0.001, effect size r = 0.6) that a person's experience of breathlessness should be used to guide treatment decisions (from 43 to 73% strong agreement). Participants' belief that cognitive behavioural strategies are effective for relief of breathlessness changed further toward agreement after the workshop (81 to 100%, McNemar test chi- square = 5.14, p = 0.02). CONCLUSION: The focus of this training on biopsychosocial understandings of chronic breathlessness and involvement of people living with this symptom were valued. These features were identified as facilitators of change in fundamental attitudes and preparedness for practice.

Approaches to palliative oxygen therapy in chronic obstructive pulmonary disease: a multi-national survey of specialists.

As palliative oxygen therapy (POT) is beneficial only to a minority of patients with chronic breathlessness, it is no longer routinely recommended. This multi-national, online survey of respiratory and palliative medicine specialists, with 440 participants, identified that prescription of POT has decreased over the past decade; however a sizeable proportion of doctors, particularly within palliative care, still support and recommend POT. Further education and research regarding the optimal management of chronic breathlessness are required.

Attitudes to specialist palliative care and advance care planning in people with COPD: a multi-national survey of palliative and respiratory medicine specialists.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) guidelines recommend early access to palliative care together with optimal, disease-directed therapy for people with advanced disease, however, this occurs infrequently. This study explored the approaches of respiratory and palliative medicine specialists to palliative care and advance care planning (ACP) in advanced COPD. METHODS: An online survey was emailed to all specialists and trainees in respiratory medicine in Australia and New Zealand (ANZ), and to all palliative medicine specialists and trainees in ANZ and the United Kingdom. RESULTS: Five hundred seventy-seven (33.1%) responses were received, with 440 (25.2%) complete questionnaires included from 177 respiratory and 263 palliative medicine doctors. Most respiratory doctors (140, 80.9%) were very or quite comfortable providing a palliative approach themselves to people with COPD. 113 (63.8%) respiratory doctors recommended referring people with advanced COPD to specialist palliative care, mainly for access to: psychosocial and spiritual care (105, 59.3%), carer support (104, 58.5%), and end-of-life care (94, 53.1%). 432 (98.2%) participants recommended initiating ACP discussions. Palliative medicine doctors were more likely to recommend discussing: what palliative care is (p < 0.0001), what death and dying might be like (p < 0.0001) and prognosis (p = 0.004). Themes highlighted in open responses included: inadequate, fragmented models of care, with limited collaboration or support from palliative care services. CONCLUSIONS: While both specialties recognised the significant palliative care and ACP needs of people with advanced COPD, in reality few patients access these elements of care. Formal collaboration and bi-directional support between respiratory and palliative medicine, are required to address these unmet needs.

Differing Approaches to Managing the Chronic Breathlessness Syndrome in Advanced COPD: A Multi-National Survey of Specialists.

This study explored the approaches of respiratory and palliative medicine specialists to managing the chronic breathlessness syndrome in patients with severe chronic obstructive pulmonary disease. A voluntary, online survey was emailed to all specialists and trainees in respiratory medicine in Australia and New Zealand (ANZ), and to all palliative medicine specialists and trainees in ANZ and the United Kingdom (UK). Five hundred and seventy-seven (33.0%) responses were received from 1,749 specialists, with 440 (25.2%) complete questionnaires included from 177 respiratory and 263 palliative medicine doctors. Palliative medicine doctors in ANZ and the UK had similar approaches to managing chronic breathlessness, whereas respiratory and palliative medicine doctors had significantly different approaches (p < 0.0001). Both specialties most commonly recommended a combination of non-pharmacological and pharmacological breathlessness management strategies. Respiratory doctors focussed more on pulmonary rehabilitation, whereas palliative medicine doctors recommended breathing techniques, anxiety management and the handheld fan. Palliative medicine doctors (197 (74.9%)) recommended short acting oral morphine for breathlessness, as compared with 73 (41.2%) respiratory doctors (p < 0.0001). Respiratory doctors cited opioid concerns related to respiratory depression and lack of knowledge. Nineteen (10.7%) respiratory doctors made no specific recommendations for managing chronic breathlessness. Both specialties reported actively managing chronic breathlessness, albeit with differing approaches. Integrated services, which combine the complementary knowledge and approaches of both specialities, may overcome current gaps in care and improve the management of distressing, chronic breathlessness.

Use of Salivary Diurnal Cortisol as an Outcome Measure in Randomised Controlled Trials: a Systematic Review.

BACKGROUND: Dysregulation of the hypothalamic-pituitary-adrenal (HPA) axis is associated with diverse adverse health outcomes, making it an important therapeutic target. Measurement of the diurnal rhythm of cortisol secretion provides a window into this system. At present, no guidelines exist for the optimal use of this biomarker within randomised controlled trials (RCTs). PURPOSE: The aim of this study is to describe the ways in which salivary diurnal cortisol has been measured within RCTs of health or behavioural interventions in adults. METHODS: Six electronic databases (up to May 21, 2015) were systematically searched for RCTs which used salivary diurnal cortisol as an outcome measure to evaluate health or behavioural interventions in adults. A narrative synthesis was undertaken of the findings in relation to salivary cortisol methodology and outcomes. RESULTS: From 78 studies that fulfilled the inclusion criteria, 30 included healthy participants (38.5 %), 27 included patients with physical disease (34.6 %) and 21 included patients with psychiatric disease (26.9 %). Psychological therapies were most commonly evaluated (n = 33, 42.3 %). There was substantial heterogeneity across studies in relation to saliva collection protocols and reported cortisol parameters. Only 39 studies (50 %) calculated a rhythm parameter such as the diurnal slope or the cortisol awakening response (CAR). Patterns of change in cortisol parameters were inconsistent both within and across studies and there was low agreement with clinical findings. CONCLUSIONS: Salivary diurnal cortisol is measured inconsistently across RCTs, which is limiting the interpretation of findings within and across studies. This indicates a need for more validation work, along with consensus guidelines.

Uncertainty in serious illness: A national interdisciplinary consensus exercise to identify clinical research priorities.

BACKGROUND: Serious illness is characterised by uncertainty, particularly in older age groups. Uncertainty may be experienced by patients, family carers, and health professionals about a broad variety of issues. There are many evidence gaps regarding the experience and management of uncertainty. AIM: We aimed to identify priority research areas concerning uncertainty in serious illness, to ensure that future research better meets the needs of those affected by uncertainty and reduce research inefficiencies. METHODS: Rapid prioritisation workshop comprising five focus groups to identify research areas, followed by a ranking exercise to prioritise them. Participants were healthcare professionals caring for those with serious illnesses including geriatrics, palliative care, intensive care; researchers; patient/carer representatives, and policymakers. Descriptive analysis of ranking data and qualitative framework analysis of focus group transcripts was undertaken. RESULTS: Thirty-four participants took part; 67% female, mean age 47 (range 33-67). The highest priority was communication of uncertainty, ranked first by 15 participants (overall ranking score 1.59/3). Subsequent priorities were: 2) How to cope with uncertainty; 3) healthcare professional education/training; 4) Optimising clinical approaches to uncertainty; and 5) exploring in-depth experiences of uncertainty. Research questions regarding optimal management of uncertainty were given higher priority than questions about experiences of uncertainty and its impact. CONCLUSIONS: These co-produced, clinically-focused research priorities map out key evidence gaps concerning uncertainty in serious illness. Managing uncertainty is the most pressing issue, and researchers should prioritise how to optimally manage uncertainty in order to reduce distress, unlock decision paralysis and improve illness and care experience.

The effect of graded exercise therapy on fatigue in people with serious respiratory illness: a systematic review.

BACKGROUND: In adults with serious respiratory illness, fatigue is prevalent and under-recognised, with few treatment options. The aim of this review was to assess the impact of graded exercise therapy (GET) on fatigue in adults with serious respiratory illness. METHODS: Electronic databases were searched to identify randomised controlled trials (RCTs) testing GET (involving incremental increases in exercise from an established baseline) in adults with serious respiratory illness. The primary outcome was fatigue and secondary outcomes were health-related quality of life (HRQoL) and adverse events. Two authors independently screened for inclusion, evaluated risk of bias and extracted data. RESULTS: 76 RCTs were included with 3309 participants, most with a diagnosis of COPD or asthma. Reductions in fatigue measured by the Chronic Respiratory Disease Questionnaire fatigue domain score were demonstrated following GET consisting of aerobic with/without resistance training (mean difference (MD) 0.53 points, 95% CI 0.41-0.65, 11 RCTs, 624 participants) and GET using resistance training alone (MD 0.58 points, 95% CI 0.21-0.96, two RCTs, 82 participants) compared with usual care. Although the mean effect exceeded the minimal important difference, the lower end of the confidence intervals did not always exceed this threshold so the clinical significance could not be confirmed. GET consistently improved HRQoL in people with a range of chronic respiratory diseases on multiple HRQoL measures. No serious adverse events related to GET were reported. CONCLUSION: GET may improve fatigue alongside consistent improvements in HRQoL in people with serious respiratory illness. These findings support the use of GET in the care of people with serious respiratory illness.

Multicomponent services for symptoms in serious respiratory illness: a systematic review and meta-analysis.

BACKGROUND: People living with serious respiratory illness experience a high burden of symptoms. This review aimed to determine whether multicomponent services reduce symptoms in people with serious illness related to respiratory disease. METHODS: Electronic databases were searched to identify randomised controlled trials (RCTs) evaluating multicomponent services that enrolled patients due to symptoms, rather than underlying disease, and provided at least one nonpharmacological intervention. The primary outcome was chronic breathlessness and secondary outcomes were health-related quality of life (HRQoL), cough, fatigue and adverse events. At least two authors independently screened studies, assessed risk of bias and extracted data. RESULTS: Five RCTs, involving 439 patients, were included. In comparison to usual care, multicomponent services improved breathlessness mastery (Chronic Respiratory Questionnaire (CRQ) mastery scale, mean difference (MD) 0.43 points, 95% CI 0.20-0.67, three RCTs, 327 participants) and HRQoL (CRQ total score, MD 0.24 points, 95% CI 0.04-0.40, two RCTs, 237 participants). Fatigue did not improve with multicomponent services and no studies evaluated cough. No serious adverse events were reported. The one study evaluating mortality found increased survival in those accessing a multicomponent service. The certainty of evidence was very low, mainly due to detection and reporting bias. CONCLUSION: Multicomponent services improve breathlessness mastery and HRQoL, with minimal risk. These findings support the use of multicomponent symptom-directed services for people living with serious respiratory illness.

Triadic communication with teenagers and young adults with cancer: a systematic literature review - 'make me feel like I'm not the third person'.

OBJECTIVES: Clinical communication needs of teenagers and young adults with cancer (TYACs) are increasingly recognised to differ significantly from younger children and older adults. We sought to understand who is present with TYACs, TYACs' experiences of triadic communication and its impact. We generated three research questions to focus this review: (1) Who is present with TYACs in healthcare consultations/communication?, (2) What are TYACs' experiences of communication with the supporter present? and (3) What is the impact of a TYAC's supporter being present in the communication? DESIGN: Systematic review with narrative synthesis. DATA SOURCES: The search was conducted across six databases: Medline, CINAHL, Embase, PsycINFO, Web of Science and AMED for all publications up to December 2023. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Included papers were empirical research published after 2005; participants had malignant disease, diagnosed aged 13-24 years (for over 50% of participants); the research addressed any area of clinical communication. DATA EXTRACTION AND SYNTHESIS: Three independent reviewers undertook full-text screening. A review-specific data extraction form was used to record participant characteristics and methods from each included paper and results relevant to the three review questions. RESULTS: A total of 8480 studies were identified in the search, of which 36 fulfilled the inclusion criteria. We found that mothers were the most common supporter present in clinical communication encounters. TYACs' experiences of triadic communication are paradoxical in nature-the supporter can help or hinder the involvement of the young person in care-related communication. Overall, young people are not included in clinical communication and decisions at their preferred level. CONCLUSION: Triadic communication in TYACs' care is common, complex and dynamic. Due to the degree of challenge and nuances raised, healthcare professionals need further training on effective triadic communication. PROSPERO REGISTRATION NUMBER: CRD42022374528.

Traveller end of life care experiences and needs: thematic analysis.

OBJECTIVES: Travelling communities are a significant, but poorly understood, group of ethnic minorities known to experience inequalities in many aspects of healthcare, including at the end of life. This study explored the end of life care experiences and needs of Travellers, along with the perspectives of healthcare professionals. METHODS: Secondary thematic analysis of data from two focus groups and 16 interviews. Eighteen UK-based members of Travelling communities and three healthcare professionals took part in two focus groups. Sixteen hospice staff were interviewed. Data were collected by UK charity One Voice 4 Travellers in 2018. RESULTS: Tensions permeated the healthcare experience of Travellers. The perceived need for concealment of ethnic identity in the healthcare setting conflicted with participants' desire for personalised care and tailored services. Healthcare professionals' limited awareness of Travellers' cultural rituals around death led to difficulties, including misunderstandings relating to the large numbers of family gathered at the bedside of dying relatives in hospital and hospice settings. Approaches that could increase the acceptability of healthcare included Travellers working in liaison roles, increased provision of space for visiting family and cultural competency training for staff. However, challenges remain in converting ideal solutions into feasible changes. CONCLUSIONS: Improved communication and understanding between Travelling communities and healthcare professionals is needed to relieve the multilevel tensions experienced at the end of life. At an individual level, this would enable personalised care; at a systems level, cocreation of end of life care services with Travellers would help ensure that their cultural needs are met.

BREATHLEssness in INDIA (BREATHE-INDIA)-Study protocol for the co-design of a community breathlessness intervention in India using realist methods and intervention mapping.

BACKGROUND: Breathlessness that persists despite treatment of causal disease(s) is disabling, associated with high therapy-related costs and poor socioeconomic outcomes. Low resource countries bear a disproportionate burden of respiratory problems, often characterised by disabling breathlessness. Low-cost self-management breathlessness-targeted interventions are effective and deliverable in community settings but have been developed in high-income countries. We aim to understand how breathlessness self-management works in 'real life' populations and cultural contexts, to develop programme theory and co-design a prototype intervention to improve persistent breathlessness management in India. METHODS AND ANALYSIS: Using a Realist approach, Intervention Mapping and the Medical Research Council Complex Intervention Framework we will undertake two phases of work supported by our Expert Group (of respiratory, primary, palliative care physicians) and key stakeholder groups (opinion leader clinicians, community health workers and people with lived experiences of breathlessness). 1) Realist review and evaluation to identify and refine evidence and theory for breathlessness self-management, producing intervention and implementation programme theory. We will identify literature through our Expert Group, scoping searches and systematic searches (Medline, Ebscohost, CINAHL, Scopus, Psychinfo). We will map intervention components to 'what works, for whom, and where.' 2) Intervention development using Intervention Mapping to map intervention and implementation programme theory to intervention components, develop materials to support intervention delivery, and co-design a prototype educational intervention ready for early acceptability and delivery-feasibility testing and evaluation planning in India. Use of stakeholder groups is to allow people with experience of breathlessness and/or its management to contribute their views on content developed by our team based upon review of secondary data sources. Experts and Stakeholders are therefore not research subjects but are included as extended members of the study team and will not follow informed consent procedures. Experts and stakeholders will be acknowledge in outputs arising from our project if they wish to be. Our review conduct will be consistent with RAMESES quality standards. DISCUSSION: At the conclusion of our study, we will have co-designed a breathlessness intervention for use in the community setting in India ready for further evaluation of: effectiveness, socioeconomic outcomes, acceptability and transferability to other low resource settings.

Virtual reality reduces anxiety and pain in acute hospital palliative care: service evaluation.

OBJECTIVES: Virtual reality (VR) might improve symptom management, but there is limited evidence regarding VR in palliative care. We evaluated the feasibility of VR and impact on anxiety and pain for patients in a hospital palliative care consultation service. METHODS: Patients referred to a hospital specialist palliative care team, with anxiety or pain, were offered a VR intervention (a short audiovisual experience). Participants rated anxiety and pain on a 0-10 Likert severity scale pre intervention/post intervention and completed an evaluation form. Change in symptom scores was analysed by parametric statistics. RESULTS: 28 participants used VR a total of 42 times with no adverse events. Mean pain score reduced by 29% from 4.10 (SD=2.71) pre intervention to 2.93 (SD=2.45) post intervention (t(27)=5.150, p<0.001). Mean anxiety scores reduced by 40% from 4.43 (SD=2.56) to 2.65 (SD=2.24) (t(27)=5.058, p<0.001). Patients rated the experience on average 4.75/5 and all would recommend use to a friend. VR was described as absorbing and relaxing. CONCLUSION: VR may improve anxiety and pain and was acceptable in this setting. Large-scale evaluation will generate important data on feasibility and implementation.

Gypsy, Traveller and Roma experiences, views and needs in palliative and end of life care: a systematic literature review and narrative synthesis.

BACKGROUND: Gypsy, Traveller and Roma communities are known to experience health inequalities. There has been little focus on palliative care in these communities despite the well-recognised inequalities of access to palliative care in other minority ethnic groups. METHODS: Systematic review and thematic analysis of the current evidence concerning palliative care experiences, views and needs of Gypsy, Traveller and Roma communities. Medline, Embase, Emcare, CINAHL, PsycINFO, Web of Science, Scopus, AMED, Global Health, Psychological and Behavioural Sciences Collection and BNI were searched up to November 2020, alongside author and citation searching. NHS England, Hospice UK, National Audit Office and OpenGrey were searched as grey literature sources. Gough's 'Weight of Evidence' framework was used for quality appraisal. RESULTS: Thirteen papers from eight studies were included in the synthesis. Although there was variation between communities, three overarching and inter-related themes were identified. (1) Strong family and community values include a preference for healthcare to be provided from within the community, duty to demonstrate respect by attending the bedside and illness as a community problem with decision-making extending beyond the patient. (2) Distinct health beliefs regarding superstitions around illness, personal care, death rituals and bereavement. (3) Practical barriers to non-community healthcare provision include communication difficulties, limited awareness of and access to services, tensions between patients and healthcare professionals and lack of training in delivering culturally appropriate care. CONCLUSION: A wide range of factors influence Gypsy, Traveller and Roma community access to palliative care. Community diversity requires sensitive and highly individualised approaches to patient care. PROSPERO REGISTRATION NUMBER: 42019147905.