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Background: Emotional disclosure is the therapeutic expression of emotion. It holds potential as a means of providing psychological support. However, evidence of its efficacy in palliative settings is mixed. This may be due to variation in intervention characteristics. Aim: To derive a greater understanding of the characteristics of potentially effective emotional disclosure-based interventions in palliative care by: (1) Developing a taxonomy of emotional disclosure-based interventions tested in people with advanced disease and (2) Mapping and linking objectives, outcomes, underlying mechanisms, and implementation factors. Design: A scoping review drawing on Intervention Component Analysis to combine evidence from studies’ methods, results, and discussion sections. Data sources: Six databases were searched to May 2020 including CINAHL, PsycINFO, and MEDLINE. Studies of emotional disclosure in adults with advanced disease were included. Study quality was appraised using an established tool. Results: Seven thousand seven hundred ninety-two unique records were screened, of which 25 primary studies were included. Intervention characteristics were grouped into classes within three domains: topic of disclosure, format, and dose. Evidence was not available to determine which, if any, of the characteristics is most effective. Thematic synthesis of evidence from methods and discussion sections identified factors to consider in tailoring an emotional disclosure-based intervention to this setting, including: population characteristics (e.g. time since diagnosis), providing a safe environment, and flexibility in format. Conclusions: This review approach facilitated a clearer understanding of factors that may be key in developing emotional disclosure-based interventions for palliative populations. Intervention Component Analysis has potential for application elsewhere to help develop evidence-based interventions.

AIMS Peer-to-peer relationships between people with a brain tumour are critical to how they cope with illness. These are often premised on shared diagnoses. However, as molecular genetic/epigenetic markers revise tumour classification, the terms of such relationships could also change. We explore these relationships and the potential repercussions for patients whose diagnoses are revised according to new tumour classification. METHOD We draw on two UK-based ethnographic studies of brain tumour care. The first examined how patients navigated complex healthcare systems (2014-2016); the second explored changing classification and personalised medicine (2020-2021). Both involved repeated qualitative interviews with patients, families, clinicians and classification experts, and observations of routine care. Here, we focus on interviews and observations with patients (N=29). RESULTS Patients described how peer-to-peer relationships helped them understand their condition, envision their futures, find solidarity, navigate medical decisions, and access non-standard treatments. Many described the importance of finding people who shared their diagnosis. One patient, whose diagnosis was revised to a less aggressive tumour years after being first diagnosed, described how a radical change in prognosis challenged her relationships with peers, and contributed to significant survivor guilt as she outlived them. CONCLUSION Our findings confirm the importance of peer-to-peer relationships for patients. They suggest how changing tumour classification could have significant unforeseen social and psychological impacts for patients, including survivor guilt, by changing the nature of such relationships. We speculate that this will become more common in an era of personalised medicine and when breakthroughs in cancer understanding are more rapidly integrated in routine care.

Background Expressive writing involves writing about stressful or traumatic experiences. Despite trials in people with advanced disease, no systematic review to date has critiqued the evidence on expressive writing in this population. To synthesise the evidence of the effects of expressive writing on pain, sleep, depression and anxiety in people with advanced disease. Methods A systematic review according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. CINAHL, CENTRAL, PsycINFO and PubMed were searched from January 1986 to March 2018. Other sources included clinical data registers and conference proceedings. Studies were included if they were randomised controlled trials that assessed the impact of an intervention involving expressive writing for adults with advanced disease and/or studies involving linguistic analysis on the expressive writing output. Methodological quality was assessed using the Cochrane risk of bias tool and the Mixed Methods Appraisal Tool. The Grading of Recommendations Assessment, Development and Evaluation tool was used to assess the level of evidence for the outcomes of interest. The protocol of this systematic review has been registered on PROSPERO (CRD42017058193). Results Six eligible studies with a total of 288 participants were identified, including four randomised controlled trials. All of the trials were in cancer and recruited predominantly women. None of the interventions were tailored to the population. Studies had methodological shortcomings and evidence was generally of low quality. Combined analysis of the four trials, involving 214 participants in total, showed no clear difference in the effect of expressive writing on sleep, anxiety or depression compared to an active control. Pain was not evaluated in the trials. In contrast, analysis of the four studies that included linguistic analysis alluded to linguistic mechanisms for potential effects. Conclusion Although the trial results suggest there is no benefit in expressive writing for people with advanced disease, the current evidence is limited. There is a need for more rigorous trials. It would be of benefit first to undertake exploratory research in trial design including how best to measure impact and in tailoring of the intervention to address the specific needs of people with advanced disease. Trial registration The protocol of this systematic review has been registered on PROSPERO, which can be accessed here (registration number: CRD42017058193). Electronic supplementary material The online version of this article (10.1186/s12904-019-0449-y) contains supplementary material, which is available to authorized users.

ADAPTeR is a prospective, phase II study of nivolumab (anti-PD-1) in 15 treatment-naive patients (115 multiregion tumor samples) with metastatic clear cell renal cell carcinoma (ccRCC) aiming to understand the mechanism underpinning therapeutic response. Genomic analyses show no correlation between tumor molecular features and response, whereas ccRCC-specific human endogenous retrovirus expression indirectly correlates with clinical response. T cell receptor (TCR) analysis reveals a significantly higher number of expanded TCR clones pre-treatment in responders suggesting pre-existing immunity. Maintenance of highly similar clusters of TCRs post-treatment predict response, suggesting ongoing antigen engagement and survival of families of T cells likely recognizing the same antigens. In responders, nivolumab-bound CD8+ T cells are expanded and express GZMK/B. Our data suggest nivolumab drives both maintenance and replacement of previously expanded T cell clones, but only maintenance correlates with response. We hypothesize that maintenance and boosting of a pre-existing response is a key element of anti-PD-1 mode of action.

International audience; Although thousands of solid tumors have been sequenced to date, a fundamental under-sampling bias isinherent in current methodologies. This is caused by a tissue sample input of fixed dimensions (e.g., 6 mmbiopsy), which becomes grossly under-powered as tumor volume scales. Here, we demonstrate representative sequencing (Rep-Seq) as a new method to achieve unbiased tumor tissue sampling. Rep-Seq uses fixed residual tumor material, which is homogenized and subjected to next-generation sequencing. Analysis of intratumor tumor mutation burden (TMB) variability shows a high level of misclassification using current single-biopsy methods, with 20% of lung and 52% of bladder tumors having at least one biopsy with high TMB butlow clonal TMB overall. Misclassification rates by contrast are reduced to 2% (lung) and 4% (bladder) when a more representative sampling methodology is used. Rep-Seq offers an improved sampling protocol for tumor profiling, with significant potential for improved clinical utility and more accurate deconvolution of clonal structure.

Background Bispectral Index (BIS) monitoring uses electroencephalographic data to measure patients‘ level of consciousness. Our I-CAN-CARE study sought to explore the use of BIS in palliative care. Our preliminary work indicated that while a few clinicians had some reservations about the technology, patients and relatives did not. We therefore proceeded to investigate BIS in practice. Objective To evaluate the feasibility of trialling BIS monitoring with conscious UK hospice patients. Methods We conducted a prospective study of BIS with hospice inpatients, trialling the technology for a period of four hours. Feasibility was assessed against the following a priori criteria: percentage of recruited patients 15%, and three criteria related to BIS specifically: percentage of eligible patients refusing to be approached for technology-related reasons 10%; percentage of technology-related refusals to participate 10%; and rate of non-completion due to the technology 10%. Results In 12 months, 332 hospice inpatients were screened for eligibility, and 177 (53.3%) deemed eligible for the researcher to approach for consent. For reasons related to the technology, one patient refused approach (1/177); 34 could not be approached for other reasons. Six of those approached (6/142; 4.2%) refused consent due to the technology. In all, 40/142 (28.2%) agreed to participate. Thirty-nine of the 40 recruited were monitored with BIS (it was impossible to monitor the other patient successfully). Two participants (2/39; 5.1%) requested that monitoring stop before the endpoint for reasons relating to the technology. Conclusions Our findings show that it is feasible and acceptable to conduct research into BIS technology with conscious inpatients on a palliative care unit. The use of BIS did not markedly limit recruitment or retention, and most participants were content. Our analysis will proceed to examine data from these participants on the utility of BIS monitoring.

Background: The use of observational measures to assess palliative care patients’ level of consciousness may improve patient care and comfort. However, there is limited knowledge regarding the validity and reliability of these measures in palliative care settings. Aim: To identify and evaluate the psychometric performance of observational level of consciousness measures used in palliative care. Design: Systematic review; PROSPERO registration: CRD42017073080. Data sources: We searched six databases until November 2018, using search terms combining subject headings and free-text terms. Psychometric performance for each identified tool was appraised independently by two reviewers following established criteria for developing and evaluating health outcome measures. Results: We found 35 different levels of consciousness tools used in 65 studies. Only seven studies reported information about psychometric performance of just eight tools. All other studies used either ad hoc measures for which no formal validation had been undertaken ( n = 21) or established tools mainly developed and validated in non-palliative care settings ( n = 37). The Consciousness Scale for Palliative Care and a modified version of the Richmond Agitation–Sedation Scale received the highest ratings in our appraisal, but, since psychometric evidence was limited, no tool could be assessed for all psychometric properties. Conclusion: An increasing number of studies in palliative care are using observational measures of level of consciousness. However, only a few of these tools have been tested for their psychometric performance in that context. Future research in this area should validate and/or refine the existing measures, rather than developing new tools.

Cancer-related fatigue is the most prevalent and distressing symptom experienced by adolescents and young adults (AYAs). An electronic survey was undertaken to ascertain current fatigue management and perceptions of its effectiveness. Eighty-five percent of responders (68/80) experienced fatigue, and it was worse more than 1 year after cancer treatment ended, compared to

Background: Researchers report difficulties in conducting research with children and young people with life-limiting conditions or life-threatening illnesses and their families. Recruitment is challenged by barriers including ethical, logistical and clinical considerations. Aim: To explore how children and young people (aged 0–25 years) with life-limiting conditions or life-threatening illnesses and their families were identified, invited and consented to research published in the last 5 years. Design: Systematic review. Data sources: MEDLINE, PsycINFO, Web of Science, Sciences Citation Index and SCOPUS were searched for original English language research published between 2009 and 2014, recruiting children and young people with life-limiting conditions or life-threatening illness and their families. Results: A total of 215 studies – 152 qualitative, 54 quantitative and 9 mixed methods – were included. Limited recruitment information but a range of strategies and difficulties were provided. The proportion of eligible participants from those screened could not be calculated in 80% of studies. Recruitment rates could not be calculated in 77%. A total of 31% of studies recruited less than 50% of eligible participants. Reasons given for non-invitation included missing clinical or contact data, or clinician judgements of participant unsuitability. Reasons for non-participation included lack of interest and participants’ perceptions of potential burdens. Conclusion: All stages of recruitment were under reported. Transparency in reporting of participant identification, invitation and consent is needed to enable researchers to understand research implications, bias risk and to whom results apply. Research is needed to explore why consenting participants decide to take part or not and their experiences of research recruitment.

Background & Aims People with cirrhosis have unmet needs, which could benefit from a palliative care approach. Developing effective services needs to be based on evidence from those with personal experience. This review aims to explore; patient and family perspectives of perceived needs including communication; health professionals' perspectives on delivery of care and improving palliative care between specialities. Methods A literature search was conducted in Medline, Embase and CINAHL using key words reporting on the perspectives of patients with liver cirrhosis (18 years and over), family members or health professionals on the provision of care in liver cirrhosis. Study quality was assessed using the Mixed Methods Appraisal Tool. Qualitative and quantitative findings were grouped together according to the main relevant themes identified. Results Nineteen research studies predominantly from high-income Western countries were identified, with a total sample consisting of 1,413 patients, 31 family carers and 733 health professionals. Patients and family members had limited understanding of cirrhosis or its impact. They wanted better information about their disease, its treatment and help with psychological and practical needs. Health professionals had difficulty communicating about these issues to patients and their families. General practitioners left care predominantly to the liver clinicians, who lacked confidence to have discussions about prognosis or future care preferences. The role of palliative care was recognised as important in caring for this group through earlier integration with liver and community services. Conclusions Health professionals need support to improve their communication with patients, to address patients' broader needs beyond medical treatment and to develop new models to improve palliative care coordination between different medical specialities. Future research should focus on developing communication aides, testing existing tools to identify suitable patients for supportive care and exploring robust ways of evaluating supportive care interventions, with more studies needed from middle- and low-income countries. Registration number: PROSPERO CRD42017064770. Lay summary Patients and their families had a poor understanding of advanced liver disease and its impact on them. They need more information about the treatments they receive and how to get practical and psychological support. Liver specialists and GPs found it difficult to talk to patients and their families about the seriousness of advanced liver disease and the lack of healthcare options available to them if their condition gets worse. All doctors and nurses involved in the care of patients with advanced liver disease recognise that palliative and supportive care have an important role in improving patient care.

Background Symptoms of depression (SDEP) are common; antidepressants are not always effective or appropriate, especially in palliative care (PC) cohorts (where the priority is timely effect). Methylphenidate, a psychostimulant, may offer an alternative. The related 2008 Cochrane review1 contained a heterogeneous group of trials and was inconclusive. New trial data has become available. Aim To evaluate via systematic review the effectiveness and safety of methylphenidate (single-agent or adjunct) in treating depression and SDEP in adults who have advanced medical conditions or are receiving PC. Methods We searched published papers of randomised controlled trials (RCTs) in any language from 2006-present on key online databases, manufacturer9s trial listings, reference searching, and personal communication. Citations were screened in duplicate. Trials meeting criteria were collated with relevant RCTs from the previous review.1 Cohorts with traumatic brain injury were excluded. The primary outcome measures were: effect of MPD on overall SDEP (at days 7 and 28), and adverse events (AEs). Where homogeneity allowed, meta-analysis was planned. Data were extracted and checked by two authors. Cochrane Collaboration guidelines assessed bias risk in 6-domains. GRADE criteria rated overall evidence. Results Six papers were identified (including two from previous review), outlining five RCTs and two n-of-1 trials. Five used MPD alone and two MPD as adjunct to mirtazapine or SSRI, for a total of 229 patients. Trials compared MPD to placebo or desipramine. Small sample sizes and poor recruitment meant all trials were at high bias risk. Unfortunately, trials were heterogeneous and meaningful meta-analysis could not be performed. Most trials showed a trend toward effectiveness, however results were frequently not statistically significant. One recent trial found no evidence of effect. Methylphenidate was generally well-tolerated. Conclusion There remains no conclusive evidence as to whether methylphenidate is an effective antidepressant in PC cohorts. Reference . Candy, et al. Psychostimulants for depression. Cochrane Database2008;(2):CD006722.

Good end of life care (EOLC) for patients with incurable cancer is becoming a greater priority for oncologists in recent years. Frameworks such as the Liverpool Care Pathway (LCP) have often been helpful in guiding good care at the end of life. However, in the past year, the LCP has been phased out of use in the United Kingdom (UK), following concerns that it was poorly implemented. This review describes the LCP′s origins in the UK, its strengths and limitations, and the concerns that prompted a review of its use. It describes the recommendations for change made by an independent review, and the alternative strategies now being developed in the UK to guide good EOLC. Although the LCP is still being widely used worldwide, the lessons learned from the UK can be widely applied in other countries.

IntroductionComplex interventions are common in palliative care (PC) but are difficult to evaluate. Complementary therapies (CT) are one type of widely-used complex intervention for which there is inconclusive evidence. No systematic review has been conducted in PC of trials or of qualitative studies of patients’ views of CTs. There are novel approaches with established exemplars of using both types of reviews to help develop more clinically appropriate interventions. These approaches are in their infancy in PC research and have much to offer the specialism.AimsUsing our on-going review on CT we present as an exemplar in PC an approach to draw together the findings of trials and qualitative studies in a data table (matrix) to contrast what patients value and want with how the intervention is tested.MethodsWe sought trials on the effectiveness of CT and qualitative studies on patients’ perspectives about these therapies. Our primary outcomes for trials included anxiety. Eight databases were searched in 2017. Citations and full-text papers were reviewed to identify relevant studies. Meta-analyses pooled trial data where appropriate and a thematic synthesis is being undertaken to understand patient experience. These findings will be combined in a matrix to explore similarities and differences.Results19 trials and five qualitative studies were included. Data analysis and development of the matrix which includes intervention content and patients’ needs is currently underway. We will present the final matrix framework.ConclusionsOur approach demonstrates a potential way in PC to enhance development of practice appropriate complex interventions.

IntroductionThis study uses ethnographic methods to explore multidisciplinary team decision-making with a focus on prognoses at the end of life.Previous research highlights that patients carers and clinicians value accurate prognostication. Both the recognition of dying and communicating this to patients and carers were acknowledged as key unanswered research questions in the PeolcPSP.Providing quality palliative care requires different specialisms to meet the needs of the whole person – medically but also spiritually emotionally and socially. Multidisciplinary teams are considered vital to ensure that care is of the highest quality and that decisions made are evidence-based.AimThis study aims to understand how palliative multidisciplinary teams form collective judgements about prognoses.MethodsEthnography provided an appropriate methodology for this study as it facilitates the documentation of prognostic estimates in MDTs capturing insights into the perspectives and practices of team members exploring the influences of the structure location and nature of the meetings. Through observations and semi-structured interviews ethnography allowed an interrogation of the issues in decision-making.Results and next stepsPreliminary findings have highlighted that different disciplines use prognoses in diverse ways. For example social workers and discharge administrators use prognoses to fast-track care decisions and funding favouring an accurate numerical score whilst the medical team use prognoses as a suggestion of appropriate care preferring fluid descriptive terms.The findings will be used to will inform recommendations for future guidelines to MDTs to improve communication and decision making while discussing the prognoses of patients at the end of life.References. Adams E, Boulton M, Watson E. The information needs of partners and family members of cancer patients: A systematic literature review.Patient Education & Counseling2009;77(2):179–86.. Steinhauser KE, Christakis NA, Clipp EC, et al.Preparing for the end of life: Preferences of patients families physicians and other care providers. Journal of Pain & Symptom Management2001;22(3):727–37.. Kutner JS, Steiner JF, Corbett KK, et al. Information needs in terminal illness. Social Science & Medicine1999;48(10):1341–52.. Steinhauser KE., Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients family physicians and other care providers. JAMA2000;284(19):2476–82.. The Palliative and end of life care Priority Setting Partnership (PeolcPSP). Final Report (January 2015). https://palliativecarepsp.files.wordpress.com/2015/01/peolcpsp_final_report.pdf. Blazeby J, Wilson L, Metcalfe C, et al. Analysis of clinical decision making in multi-disciplinary cancer teams. Annals of Oncology2006;17:457–60.

IntroductionBispectral Index (BIS) monitoring uses electroencephalographic data to objectively measure patients’ level of consciousness and might be a useful supplement to clinical observation when using sedative medication in palliative care. However its acceptability to UK palliative care service users is unknown.AimTo explore the acceptability of BIS technology with UK hospice patients and relatives.MethodsWe conducted focus groups and individual interviews with patients and relatives in a UK hospice and analysed data thematically.Results10 patients and 15 relatives participated in seven focus groups and three interviews. Responses from patient participants were similar to those from relatives and four themes emerged:Knowledge and experience of current monitoring of sedation/consciousnessAcceptable duration of monitoringReservations about using technological devices in palliative carePotential benefits of using BIS.Participants’ comments on potential benefits included that BIS alongside routine clinical practice might help ensure comfort at the end of life and serve to assure medical needs are being met particularly for people who cannot communicate. Participants generally felt that the duration of BIS monitoring should be informed by each patient’s individual needs while some expressed that patients and/or families should be consulted before using the monitor. Participants also noted that BIS while possibly obtrusive is not invasive.ConclusionsOur participants considered BIS acceptable for monitoring level of consciousness and possibly helpful at the end of life. We therefore initiated an observational study exploring use of this technology in the clinical care of UK hospice inpatients.

IntroductionDelirium is a complex neuropsychiatric syndrome common in palliative care occurring in up to 88% of patients in the weeks or hours preceding death. Our Cochrane review on drug therapy for delirium in 2012 identified one trial (Candy et al. 2012). New trials have been conducted and an updated review is now recognised as a Cochrane priority.AimTo evaluate the evidence from randomised controlled trials (RCTs) examining the effectiveness and safety of drug therapies to treat delirium in adults with a terminal illness.MethodsWe searched for RCTs comparing any drug treatment with any other treatment for delirium in terminally ill adults. Primary outcomes included delirium symptoms at 24 hours and between 24–48 hours; and adverse events. Risk of bias assessment was conducted; we assessed overall quality of evidence using GRADE.ResultsWe retrieved 9431 citations. Four studies were included in the final review. All trials were vulnerable to bias most commonly due to small sample size or incomplete outcome data. Figures 1 and 2 illustrate the mean difference between trial arms at 24 hours and between 24–48 hours respectively. Three studies reported adverse events revealing mixed results.Abstract 52 Figure 1Abstract 52 Figure 2ConclusionThis review identified four trials. It found low quality evidence examining the impact of drug therapy on delirium symptoms and adverse events in terminally ill adults. Results for each comparison were based on single studies. Undertaking trials on delirium in this patient group is methodologically complex. Only one study compared drug therapy with placebo. This limited our ability to answer our review questions.Reference. Candy B, Jackson KC, Jones L, Leurent B, Tookman A, King M. Drug therapy for delirium in terminally ill adult patients. Cochrane Database of Systematic Reviews2012;(11). Art. No. CD004770. doi:10.1002/14651858.CD004770.pub2

Introduction Palliative sedation is sometimes used to manage refractory symptoms in adult palliative care patients in the UK. However, there is limited knowledge regarding which observational tools are most appropriate for monitoring the effects of sedative drugs. This review is a part of the I-CAN-CARE, a Marie Curie funded research programme. Objective To identify and critique primary studies describing the use of observational measures to assess the depth of sedation at the end of life. Methods We searched six databases (CENTRAL, Cinahl, Embase, Medline, PsychINFO, Scopus, and Web of Science) until November 2016, using search terms combining subject headings and free-text terms. Primary studies reporting on the use of observational measures to assess the effect of palliative sedation were eligible for inclusion. Two investigators independently reviewed the titles, abstracts and full-text articles retrieved, and performed the data extraction. From the included papers, a list of observational tools, their characteristics and the degree to which they have been validated, using the COSMIN checklist (Mokkink et al ., 2010), will be generated. Results to-date The searches yielded 10 208 articles after removing duplicates. The majority of studies meeting the inclusion criteria and discussing the monitoring of sedation reported using observational measures for assessing not only depth of sedation but also symptom severity. Of the identified scales assessing management of intractable symptoms, only one had been validated for palliative care settings. Five measures assessing level of consciousness had undergone partial validation for use in palliative care. Six of the observational measures identified had been evaluated for their psychometric properties in single study populations. Conclusions Few measures for monitoring sedation have been evaluated for their psychometric properties in palliative care. Next steps will be a detailed evaluation of the overall quality of the studies identified, and of the validity and reliability of the scales used. Definitive results will become available in February 2017.

Introduction The very end of life can be associated with pain, anxiety and caregiver burden. Numerous measures seek to assess the quality of death and dying and satisfaction with care, but there is a lack of evidence and consensus on the best tools. Aims To identify all existing tools for assessing quality of death and dying and the quality of care and satisfaction with care at the very end of life, and systematically evaluate those which have been psychometrically validated. Method Four databases (Medline, Embase, Cinahl and Psycinfo) were searched in February 2016 using a combination of MeSH and free-text terms on end of life and satisfaction with care. Article titles, abstracts and full-text papers were reviewed to identify all papers reporting multi-item measures for assessing quality of death and dying and/or quality of care and satisfaction with care at the very end of life. Articles reporting on at least one psychometric investigation of the measures identified were then assessed for quality, using the COSMIN checklist (Mokkink, 2010). Results The initial search terms identified 4136 articles after excluding any duplicates. Seventy-seven papers, reporting 48 different measures, met the initial inclusion criteria. The most commonly used measures were the Quality Of Death and Dying (QODD; Patrick, 2001) and FAMCARE (Kristjanson, 1986). Both have been validated in a variety of cultural settings and participant groups. Conclusion Many measures assess quality of death and dying and satisfaction with care, but few have been thoroughly validated. QODD and FAMCARE are the best of those assessed. References Kristjanson LJ.Indicators of quality of palliative care from a family perspective. J Palliat Care 1986; 1 (2): 8–17 Mokkink LB, Terwee CB, Patrick DL, et al . The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: an international Delphi study. Quality of Life Research 2010; 19 (4):539–549 Patrick DL, Engelberg RA, Curtis JR.Evaluating the quality of dying and death. J Pain Symptom Manage 2001; 22 (3):717–726

Introduction Published literature provides only limited and possibly selective knowledge (Chan et al ., 2014; Ionnidis, 2014). We are updating a Cochrane systematic review on mu-opioids antagonistic for bowel dysfunction in palliative and cancer patients in which we hope to include all relevant literature, including unpublished results. We have identified several trials where it is not known whether the study has been completed and/or whether the results are available. Including the results from these unpublished studies is in the interest of patients, doctors and the pharmaceutical industry. Furthermore, it is an important ethical issue. Aim To obtain unpublished results. Methods We sought contact with the authors and trial sponsors for the 13 trials we identified with no published data. We also searched regulatory drug reports of these trials. Results Two of the six drug companies approached responded to our letter. After inspecting the review protocol, one company stated that they were unable to give us the requested information as they disagreed with our choice of participants. A second company agreed to meet to discuss their work. They directed us to a relevant poster available on the company website and stated that they planned to write-up the trial. Responses from authors of studies not sponsored by drug companies were easier to obtain. Conclusion From trial registers and published protocols we have been able to identify many unpublished trials. Contacting the authors and companies is challenging. However, it is important to try to obtain unpublished trial reports to complete the evidence and reduce publication bias. References Chan AW, Song F, Vickers A, et al . Increasing value and reducing waste: addressing inaccessible research. The Lancet 2014; 383 (9913):257–266 Ioannidis JP. Clinical trials: what a waste. BMJ 2014; 349 :7089

Background The Prognosis in Palliative care Scale (PiPS) predicts survival in advanced cancer patients more accurately than a doctor9s or a nurse9s estimate. PiPS scores are derived using observer ratings of symptom severity and performance status. The purpose of this study was to determine whether patient-rated data would provide better prognostic estimates than clinician observer ratings. Patients and methods 1018 subjects with advanced cancer no longer undergoing tumour-directed therapy were recruited to a multi-centre study. Prognostic models were developed using observer ratings, patient ratings or a composite method that used patient ratings when available or else used observer ratings. The performance of the prognostic models was compared by determining the agreement between the models9 predictions and the survival of study participants. Results All three approaches to model development resulted in prognostic scores that were able to differentiate between patients with a survival of ‘days’, ‘weeks’ or ‘months+’. However, the observer-rated models were significantly (p Conclusions A prognostic model derived using observer-rated data was more accurate at predicting survival than a similar model derived using patient self-report measures. This is clinically important because patient-rated data can be burdensome and difficult to obtain in patients with terminal illnesses.

Previous papers reported on the magnitude of fatigue as a problem for cancer patients and the growing recognition by patients, carers and health care professionals of the impact of cancer fatigue on quality of life. This paper presents findings from a United Kingdom survey of the knowledge of cancer fatigue and its impact on patients amongst cancer nurses, radiographers, haematologists and oncologists. We discuss how the context and chronology of care may influence differences in this knowledge between cancer care team members. Future directions for collaborative care, further research and interprofessional education are outlined.

Aims To determine whether doctors, nurses or the multi-professional team (MPT) are better at prognosticating in advanced cancer. To determine which clinician factors influence prognostic accuracy. To investigate patients9 views about receiving prognostic information and to evaluate the accuracy of their own estimates. Methods As part of a large prospective multi-centre study to develop a novel prognostic scoring system for patients with advanced cancer, clinicians were asked to estimate whether patients were expected to live for ‘days’, ‘weeks’ or ‘months+’. Patients were asked whether and how they would wish to receive prognostic information and whether they would be willing/able to estimate their own prognosis. Survival was calculated from date of study entry. Prognostic accuracy of different groups was compared using linear weighted κ (LWK). Results 1018 patients with advanced cancer were studied; 127 doctors, 281 nurses and 290 patients provided 829, 954 and 290 prognostic estimates respectively. MPT estimates were available for 987 patients. LWK varied between 0.14 (patients) and 0.46 (MPT). Patients9 estimates were significantly worse than doctors9, nurses9 or MPT estimates (all p Conclusion Most patients wish to know their prognosis. Clinicians9 predictions are inaccurate and patients9 predictions are significantly worse. MPT estimates are the most accurate.