Explore the vast range of titles available.

To undertake a mixed-methodology implementation study to improve the well-being of men with gastrointestinal late effects following radical radiotherapy for prostate cancer. All men completed a validated screening tool for late bowel effects (ALERT-B) and the Gastrointestinal Symptom Rating Score (GSRS); men with a positive score on ALERT-B were offered management following a peer reviewed algorithm for pelvic radiation disease (PRD). Health-related quality of life (HRQoL) at baseline, 6 and 12 months; and healthcare resource usage (HRU) and patient, support-giver, staff experience and acceptability of staff training (qualitative analysis) were assessed. Two nurse- and one doctor-led gastroenterology services were set up in three UK cancer centres. Men (n = 339) who had had radical radiotherapy for prostate cancer at least 6 months previously, were recruited; of which 91/339 were eligible to participate; 58/91 men (63.7%) accepted the referral. Diagnoses included: radiation proctopathy (n = 18); bile acid malabsorption (n = 15); fructose or lactose intolerance and/or small intestinal bacterial overgrowth (n = 20); vitamin B12/D deficiency (n = 20). Increases in quality of life, sexual activity and/or sexual function, and decrease in specific symptoms (e.g. bowel-related or urinary) between 6 and 12 months were observed. Limited HRU modelling suggested staff costs were £117-£185, depending on the service model; total costs averaged £2,243 per patient. Both staff and patients welcomed the new service although there was concern about long-term funding and sustainability beyond the timeframe of the study (qualitative). PRD is increasingly recognised worldwide as an ongoing consequence of curative pelvic radiotherapy, despite widespread implementation of advanced radiotherapy techniques. Specialised services following national guidelines are required.

Background Bereavement support is a core part of palliative care. However, the evidence base is limited by a lack of consistency in the outcomes used to evaluate services and models of support, which makes it difficult to compare approaches. Core Outcome Sets (COS) represent the minimum that should be measured in research into specific conditions or services. The aim of this study was to use a stakeholders’ perspective to develop a COS for evaluating bereavement support for adults in adult palliative care settings. Methods A list of outcomes relevant to bereavement support was created following a systematic review of the quantitative and qualitative literature. At an expert workshop 21 stakeholders discussed their views on the most important outcomes and compared these to and critiqued the lists constructed from the review. These lists and discussions informed a two round international DELPHI survey ( n  = 240) designed to reach consensus on which outcomes/outcome dimensions should be included in the COS. To prioritise and validate the items emerging from the survey, participants at a subsequent consensus day ranked the relative importance of these items ( n  = 23). A final feedback exercise with these consensus day participants was conducted to confirm the selection of outcomes and dimensions. Results ‘Ability to cope with grief’ and ‘Quality of life and mental wellbeing’ were selected as two core outcomes. Twenty-one different dimensions to explore when assessing these outcomes were also identified. The coping related dimensions have been categorised as: Negative and overwhelming grief; Communication and connectedness; Understanding, accepting and finding meaning in grief; Finding balance between grief and life going forwards; Accessing appropriate support. Those relating to quality of life and wellbeing have been categorised as; Participation in work and/or regular activities; Relationships and social functioning; Positive mental wellbeing and Negative mental and emotional state. Conclusion This COS outlines a more consistent way forward for bereavement researchers and practitioners, whilst also orientating towards public health and resilience-based approaches to bereavement care. Further work is planned to identify and develop measures which are specific to this core outcome set, and which will facilitate the future comparability of bereavement services and interventions.

Background COVID-19 drastically affected healthcare services world-wide. In the UK, many cancer services were overwhelmed as oncology staff were reassigned, and cancer diagnoses and treatments were delayed. The impact of these pressures on end-of-life care for patients with advanced cancer and their relatives is not well understood. Methods Secondary thematic analysis of qualitative survey and interview data, collected from family members and close friends bereaved by cancer, as part of a national COVID-19 bereavement study (Survey N  = 156; Interview N  = 10). Results Four key themes were identified: The impact of COVID-19 on contact with patients towards the end of life; Mixed experiences of support for family members; Variable communication quality from health and social care professionals; Prioritisation of COVID-19 and its impact on patient care. Hospital care was perceived more negatively than community care in almost all areas, while support from cancer charities and district nurses was appreciated the most. Almost all participants felt that COVID-19 was detrimentally prioritised over care for their relative/friend. Conclusions People bereaved by cancer were uniquely affected by pandemic-restrictions and disruptions to services. As services re-build post-pandemic, improvements in palliative care in hospitals, investment into community care, and ensuring compassionate communication with patients and families must be prioritised, alongside preparedness for future pandemics or similar events.

To describe the development, validation and inter-rater reliability of an instrument to measure the quality of patient decision support technologies (decision aids). Scale development study, involving construct, item and scale development, validation and reliability testing. There has been increasing use of decision support technologies--adjuncts to the discussions clinicians have with patients about difficult decisions. A global interest in developing these interventions exists among both for-profit and not-for-profit organisations. It is therefore essential to have internationally accepted standards to assess the quality of their development, process, content, potential bias and method of field testing and evaluation. Scale development study, involving construct, item and scale development, validation and reliability testing. Twenty-five researcher-members of the International Patient Decision Aid Standards Collaboration worked together to develop the instrument (IPDASi). In the fourth Stage (reliability study), eight raters assessed thirty randomly selected decision support technologies. IPDASi measures quality in 10 dimensions, using 47 items, and provides an overall quality score (scaled from 0 to 100) for each intervention. Overall IPDASi scores ranged from 33 to 82 across the decision support technologies sampled (n = 30), enabling discrimination. The inter-rater intraclass correlation for the overall quality score was 0.80. Correlations of dimension scores with the overall score were all positive (0.31 to 0.68). Cronbach's alpha values for the 8 raters ranged from 0.72 to 0.93. Cronbach's alphas based on the dimension means ranged from 0.50 to 0.81, indicating that the dimensions, although well correlated, measure different aspects of decision support technology quality. A short version (19 items) was also developed that had very similar mean scores to IPDASi and high correlation between short score and overall score 0.87 (CI 0.79 to 0.92). This work demonstrates that IPDASi has the ability to assess the quality of decision support technologies. The existing IPDASi provides an assessment of the quality of a DST's components and will be used as a tool to provide formative advice to DSTs developers and summative assessments for those who want to compare their tools against an existing benchmark.

Background Symptom management is an essential aspect of palliative and end-of-life care, but evidence suggests that patients’ symptoms may not always be relieved, causing significant harm to patients and magnifying their relatives’ distress. A growing body of evidence focuses on symptom management at the end-of-life, but research funding for palliative care remains disproportionately low. It is therefore crucial that research funding is targeted at areas of importance to patients and relatives. The Palliative and end-of-life care Priority Setting Partnership (PeolcPSP) undertook a UK-wide free-text survey to establish research priorities within palliative and end-of-life care and disseminated its results in 2015. Much of the data were related more broadly to personal perceptions and experiences rather than specific research questions. The aim of this article is to report on a supplementary analysis exploring the experiences and questions of PeolcPSP survey respondents regarding symptoms, hydration and nutrition. Methods The PeolcPSP data ( n  = 1403) were coded by a team of qualitative researchers in a supplementary analysis. There were 190 responses that related to symptoms, nutrition and hydration. The data were analysed thematically using Braun and Clarke’s approach. Results Five themes were identified: pain, breathlessness, agitation, nutrition and hydration. The majority of responses related to symptoms that were sub-optimally managed, in particular pain. Nutrition and hydration were of significant concern, particularly for carers. Overall, respondents consistently asked about the most effective, evidence-based methods for managing symptoms and suggested areas where further research is necessary. Conclusions This study highlights the perceptions and experiences of patients, families and professionals within palliative care, highlighting the need for improved care, communication and further research to establish which treatments are most effective within a palliative care population. This is essential to reduce harm and distress for patients and families.

IntroductionPrimary brain tumours, specifically gliomas, are a rare disease group. The disease and treatment negatively impacts on patients and those close to them. The high rates of physical and cognitive morbidity differ from other cancers causing reduced health-related quality of life. Glioma trials using outcomes that allow holistic analysis of treatment benefits and risks enable informed care decisions. Currently, outcome assessment in glioma trials is inconsistent, hindering evidence synthesis. A core outcome set (COS) - an agreed minimum set of outcomes to be measured and reported - may address this. International initiatives focus on defining core outcomes assessments across brain tumour types. This protocol describes the development of a COS involving UK stakeholders for use in glioma trials, applicable across glioma types, with provision to identify subsets as required. Due to stakeholder interest in data reported from the patient perspective, outcomes from the COS that can be patient-reported will be identified.Methods and analysisStage I: (1) trial registry review to identify outcomes collected in glioma trials and (2) systematic review of qualitative literature exploring glioma patient and key stakeholder research priorities. Stage II: semi-structured interviews with glioma patients and caregivers. Outcome lists will be generated from stages I and II. Stage III: study team will remove duplicate items from the outcome lists and ensure accessible terminology for inclusion in the Delphi survey. Stage IV: a two-round Delphi process whereby the outcomes will be rated by key stakeholders. Stage V: a consensus meeting where participants will finalise the COS. The study team will identify the COS outcomes that can be patient-reported. Further research is needed to match patient-reported outcomes to available measures.Ethics and disseminationEthical approval was obtained (REF SMREC 21/59, Cardiff University School of Medicine Research Ethics Committee). Study findings will be disseminated widely through conferences and journal publication. The final COS will be adopted and promoted by patient and carer groups and its use by funders encouraged.PROSPERO registration numberCRD42021236979.

The communication of risk is a central activity in clinical genetics, with genetic health professionals encouraging the dissemination of relevant information by individuals to their at-risk family members. To understand the process by which communication occurs as well as its outcomes, a systematic review of actual communication in families about genetic risk was conducted. Findings from 29 papers meeting the inclusion criteria were summarised and are presented narratively. Family communication about genetic risk is described as a deliberative process, in which: sense is made of personal risk; the vulnerability and receptivity of the family member is assessed; decisions are made about what will be conveyed; and the right time to disclose is selected. The communication strategy adopted will depend on these factors and varies within families as well as between families. Inherent in these processes are conflicting senses of responsibility: to provide potentially valuable information and to prevent harm that may arise from this knowledge. However, the research ‘outcomes’ of communication have been professionally determined (number of relatives reported as informed, uptake of testing, knowledge of the recipient) and are typically unrelated to the concerns of the family member. The impact of communication on the individual, family members, and family relationships is of concern to the individual conveying the information, but this is largely self-reported. Currently, there is insufficient information to inform the development of theoretically and empirically based practice to foster ‘good’ communication. The implications for future research are discussed.

IntroductionGeneral Practitioners (GPs) are at the forefront of healthcare. However, GPs are facing extensive pressures, including ever-increasing patient demand and limited resources. We report the results of an online survey and interviews with GP practices to understand their experiences in providing palliative and end-of-life care. This work was undertaken as part of an independent evaluation of the ‘Daffodil Standards for Advanced Serious Illness and End of Life Care,’ (1,2) created by the Royal College of General Practitioners and Marie Curie.AimsTo map end-of-life activities and identify processes and mechanisms of implementation of the Daffodil Standards.MethodsAn online survey was disseminated to GP practices in the UK (September 2022). Those signed up to the Daffodil Standards answered questions about their end-of-life care activities, and experiences of implementation and impact. Those not signed up to the Standards were asked about their end-of-life care activities, their experiences, and challenges they have faced. We will undertake semi-structured interviews with a sub-sample of survey respondents to identify processes and mechanisms of implementation. We are prepared for pragmatic contingency plans should we experience poor engagement due to the challenges NHS primary care is facing, including focus groups with participants signed up to the Standards. Data will be analysed using descriptive statistics (survey) and Framework Analysis (survey, interviews, and/or focus groups).ResultsTen respondents have completed the survey to date. Preliminary data will be available for presentation in February 2023.ConclusionsThe data will be used to inform and refine the design of a set of case studies to capture learning and identify exemplars of best practice for later phases of the study.ImpactGreater understanding of key barriers and enablers from existing efforts to sustain and improve end-of-life care in general practice, and identify exemplars of high-quality practice, building up an evidence-base to encourage wider implementation of the Standards.Reference(s)1. Royal College of General Practitioners (2021). The Daffodil Standards. 10th October 2022. https://rcgp.org.uk/learning-resources/daffodil-standards2. Marie Curie (2022). Daffodil Standards for GPs. 10th October 2022. https://www.mariecurie.org.uk/professionals/working-in-partnership/royal-college-of-gps/daffodil-standards

IntroductionIn 2019 the Royal College of General Practitioners and Marie Curie launched the ‘GP Daffodil Standards for Advanced Serious Illness and End of Life Care’ to support delivery of exemplary palliative and end-of-life care. Following an independent evaluation of their implementation, we present the final results and recommendations.AimsTo evaluate and provide recommendations for the improvements and implementation of the Daffodil Standards.MethodsMulti-method evaluation, underpinned by the Normalisation Process Theory.Phases 1 and 2: online survey (Phase 1) and semi-structured interviews (Phase 2) with a sub-sample of survey respondents to: map end-of-life activities and understand how the standards are being used in practice.Phase 3: capture illustrative case studies on how the standards have been used to improve or sustain the quality of end-of-life care.Data AnalysesDescriptive statistics (Phase 1); qualitative Framework Analysis (free text data - Phase 1; interview transcripts - Phases 2 and 3).ResultsData collection commenced in September 2022 (Phases 1 and 2) and October 2023 (Phase 3); data collection for all three phases will continue until the end of 2023. To date, 85 surveys (Phase 1) and 8 semi-structured interviews (Phase 2) are complete. Results indicate motivation to undertake end-of-life care activities and use of the Daffodil Standards. However, GPs face challenges in lack of resources and capacity to progress this further. There is also emerging evidence of misperceptions about the purpose and role of the Daffodil Standards. Phase 3: two interviews have been confirmed and will commence in October 2023.ConclusionsWe will continue to share best practices and recommendations for both continued implementation and sustainability of the Daffodil Standards.ImpactPrimary care plays a key role in palliative and end-of-life care. However, the challenges and pressures on GPs are likely to limit uptake and implementation of the Daffodil Standards.

IntroductionThe decision to continue or stop antithrombotic therapy (ATT) towards the end of life is complex and involves careful decisions about the risks and benefits.Shared decision-making is essential to ensure patient’s preferences are included in decisions. The views and experiences of clinicians involved in deprescribing ATT are not well understood. This study includes initial interviews from the SERENITY study, which aims to develop a shared decision-making tool to support ATT deprescribing decisions in advanced cancer patients.AimsThis study aims to gain an understanding of how clinician’s make decisions about deprescribing ATT in patients with advanced cancer, factors influencing those decisions, and attitudes towards shared decision-making.MethodFive clinicians were interviewed (two haematologists, a clinical oncologist, a vascular surgeon, and a palliative care consultant). Transcripts were coded and analysed using thematic analysis. Themes and subthemes were generated, refined and validated through discussions with the research team.ResultsClinicians described complexities involved in prescribing decisions due to variation in patients’ medical history, cancer type, and risk of thrombosis and bleeding. Multi-disciplinary discussions were seen as important and clinicians advocated including patients in shared decision-making. However, there were varied perceptions about which clinician should initiate deprescribing decisions with patients, and some clinicians were more comfortable and experienced in this role.ConclusionThe decision to deprescribe ATT near the end of life is complex, involving a range of different clinicians. More guidance is needed for clinicians to understand their role in deprescribing decisions, help ensure patients preferences are included in deprescribing decisions and understand and address any barriers around these conversations.ImpactThese findings combined with further qualitative evidence from clinicians and patients included in the Serenity Study will help inform the development of shared decision-making support tool to support clinicians and patients making decisions about continuing or deprescribing ATT.