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Background: Outcome measurement plays an increasing role in improving the quality, effectiveness, efficiency and availability of palliative care. Aim: To provide expert recommendations on outcome measurement in palliative care in clinical practice and research. Methods: Developed by a European Association for Palliative Care Task Force, based on literature searches, international expert workshop, development of outcome measurement guidance and international online survey. A subgroup drafted a first version and circulated it twice to the task force. The preliminary final version was circulated to wider expert panel and 28 international experts across 20 European Association for Palliative Care member associations and the European Association for Palliative Care Board of Directors and revised according to their feedback. The final version was approved by the European Association for Palliative Care Board for adoption as an official European Association for Palliative Care position paper. Results: In all, 12 recommendations are proposed covering key parameters of measures, adequate measures for the task, introduction of outcome measurement into practice, and national and international outcome comparisons and benchmarking. Compared to other recommendations, the White Paper covers similar aspects but focuses more on outcome measurement in clinical care and the wider policy impact of implementing outcome measurement in clinical palliative care. Patient-reported outcome measure feedback improves awareness of unmet need and allows professionals to act to address patients’ needs. However, barriers and facilitators have been identified when implementing outcome measurement in clinical care that should be addressed. Conclusion: The White Paper recommends the introduction of outcome measurement into practice and outcomes that allow for national and international comparisons. Outcome measurement is key to understanding different models of care across countries and, ultimately, patient outcome having controlled for differing patients characteristics. [ABSTRACT FROM AUTHOR]

Background: Standardized approaches for assessing and classifying cancer pain are required to improve treatment of patients with complex pain profiles. The Edmonton Classification System for Cancer Pain (ECS-CP) offers a starting point for the evolution of a standardized international classification system for cancer pain and was introduced into multisite research initiatives of the European Palliative Care Research Collaborative (EPCRC). Objectives: The primary purpose of this study was to describe the prevalence of the five ECS-CP pain classification features: pain mechanism, incident pain, psychological distress, addictive behavior, and cognition-in a diverse international sample of patients with advanced cancer. Methods: A total of 1070 adult patients with advanced cancer were recruited from 17 sites in Norway, the United Kingdom, Austria, Germany, Switzerland, Italy, Canada, and Australia; 1051 of 1070 patients were evaluable. A clinician completed the ECS-CP for each enrolled patient. Additional information, including pain intensity, were also collected through patient self-reports, using touch-sensitive computers. Results: Of 1051 evaluable patients, 670 (64%) were assessed by a clinician as having cancer pain: nociceptive pain ( n=534; 79.7%); neuropathic pain ( n=113; 16.9%); incident pain ( n=408; 60.9%); psychological distress ( n=212; 31.6%); addictive behavior ( n=30; 4.5%); normal cognition ( n=616; 91.9%). The prevalence of ECS-CP features and pain intensity scores (11-item scale; 0=none, 10=worst; rated as now) varied substantially across sites and locations of care. Conclusion: The ECS-CP is a clinically relevant systematic framework, which is able to detect differences in salient pain classification features across diverse settings and countries. Further validation studies need to be conducted in varied advanced cancer and palliative care settings to advance the development of the ECS-CP toward an internationally recognized pain classification system. [ABSTRACT FROM AUTHOR]

Background: Many people are dying from coronavirus disease 2019 (COVID-19), but consensus guidance on palliative care in COVID-19 is lacking. This new life-threatening disease has put healthcare systems under pressure, with the increased need of palliative care provided to many patients by clinicians who have limited prior experience in this field. Therefore, we aimed to make consensus recommendations for palliative care for patients with COVID-19 using the Convergence of Opinion on Recommendations and Evidence (CORE) process., Methods: We invited 90 international experts to complete an online survey including stating their agreement, or not, with 14 potential recommendations. At least 70% agreement on directionality was needed to provide consensus recommendations. If consensus was not achieved on the first round, a second round was conducted., Results: 68 (75.6%) experts responded in the first round. Most participants were experts in palliative care, respiratory medicine or critical care medicine. In the first round, consensus was achieved on 13 recommendations based upon indirect evidence and clinical experience. In the second round, 58 (85.3%) out of 68 of the first-round experts responded, resulting in consensus for the 14th recommendation., Conclusion: This multi-national task force provides consensus recommendations for palliative care for patients with COVID-19 concerning: advance care planning; (pharmacological) palliative treatment of breathlessness; clinician-patient communication; remote clinician-family communication; palliative care involvement in patients with serious COVID-19; spiritual care; psychosocial care; and bereavement care. Future studies are needed to generate empirical evidence for these recommendations., Competing Interests: Conflict of interest: M. Ekström has nothing to disclose. Conflict of interest: D.C. Currow reports that he is an unpaid advisory board member for Helsinn Pharmaceuticals, is a paid consultant and receives payment for intellectual property with Mayne Pharma, and is a consultant with Specialised Therapeutics Australia Pty. Ltd. Conflict of interest: M.J. Johnson reports institutional payments for consultancy from Mayne Pharma, during the conduct of the study. Conflict of interest: M. Maddocks has nothing to disclose. Conflict of interest: A.K. Simonds has nothing to disclose. Conflict of interest: T. Tonia is an ERS methodologist. Conflict of interest: K. Marsaa reports personal fees from GlaxoSmithKline, AstraZeneca, Boehringer Ingelheim, Novartis, Roche, Bristol-Myers Squibb, Chiesi Pharma, Kyowa Kirin AB and Norgine, outside the submitted work. Conflict of interest: D.J.A. Janssen reports personal fees for lectures from Novartis, Boehringer Ingelheim and AstraZeneca, outside the submitted work., (Copyright ©ERS 2020.)

Contrary to common perception, modern palliative care (PC) is applicable to all people with an incurable disease, not only cancer. PC is appropriate at every stage of disease progression, when PC needs emerge. These needs can be of physical, emotional, social, or spiritual nature. This document encourages the use of validated assessment tools to recognize such needs and ascertain efficacy of management. PC interventions should be provided alongside cardiologic management. Treating breathlessness is more effective, when cardiologic management is supported by PC interventions. Treating other symptoms like pain or depression requires predominantly PC interventions. Advance Care Planning aims to ensure that the future treatment and care the person receives is concordant with their personal values and goals, even after losing decision-making capacity. It should include also disease specific aspects, such as modification of implantable device activity at the end of life. The Whole Person Care concept describes the inseparability of the physical, emotional, and spiritual dimensions of the human being. Addressing psychological and spiritual needs, together with medical treatment, maintains personal integrity and promotes emotional healing. Most PC concerns can be addressed by the usual care team, supported by a PC specialist if needed. During dying, the persons' needs may change dynamically and intensive PC is often required. Following the death of a person, bereavement services benefit loved ones. The authors conclude that the inclusion of PC within the regular clinical framework for people with heart failure results in a substantial improvement in quality of life as well as comfort and dignity whilst dying., (Published on behalf of the European Society of Cardiology. All rights reserved. © The Author(s) 2019. For permissions, please email: journals.permissions@oup.com.)

Background: Population-based cancer survival estimates provide valuable insights into the effectiveness of cancer services and can reflect the prospects of cure. As part of the second phase of the International Cancer Benchmarking Partnership (ICBP), the Cancer Survival in High-Income Countries (SURVMARK-2) project aims to provide a comprehensive overview of cancer survival across seven high-income countries and a comparative assessment of corresponding incidence and mortality trends., Methods: In this longitudinal, population-based study, we collected patient-level data on 3·9 million patients with cancer from population-based cancer registries in 21 jurisdictions in seven countries (Australia, Canada, Denmark, Ireland, New Zealand, Norway, and the UK) for seven sites of cancer (oesophagus, stomach, colon, rectum, pancreas, lung, and ovary) diagnosed between 1995 and 2014, and followed up until Dec 31, 2015. We calculated age-standardised net survival at 1 year and 5 years after diagnosis by site, age group, and period of diagnosis. We mapped changes in incidence and mortality to changes in survival to assess progress in cancer control., Findings: In 19 eligible jurisdictions, 3 764 543 cases of cancer were eligible for inclusion in the study. In the 19 included jurisdictions, over 1995-2014, 1-year and 5-year net survival increased in each country across almost all cancer types, with, for example, 5-year rectal cancer survival increasing more than 13 percentage points in Denmark, Ireland, and the UK. For 2010-14, survival was generally higher in Australia, Canada, and Norway than in New Zealand, Denmark, Ireland, and the UK. Over the study period, larger survival improvements were observed for patients younger than 75 years at diagnosis than those aged 75 years and older, and notably for cancers with a poor prognosis (ie, oesophagus, stomach, pancreas, and lung). Progress in cancer control (ie, increased survival, decreased mortality and incidence) over the study period was evident for stomach, colon, lung (in males), and ovarian cancer., Interpretation: The joint evaluation of trends in incidence, mortality, and survival indicated progress in four of the seven studied cancers. Cancer survival continues to increase across high-income countries; however, international disparities persist. While truly valid comparisons require differences in registration practice, classification, and coding to be minimal, stage of disease at diagnosis, timely access to effective treatment, and the extent of comorbidity are likely the main determinants of patient outcomes. Future studies are needed to assess the impact of these factors to further our understanding of international disparities in cancer survival., Funding: Canadian Partnership Against Cancer; Cancer Council Victoria; Cancer Institute New South Wales; Cancer Research UK; Danish Cancer Society; National Cancer Registry Ireland; The Cancer Society of New Zealand; National Health Service England; Norwegian Cancer Society; Public Health Agency Northern Ireland, on behalf of the Northern Ireland Cancer Registry; The Scottish Government; Western Australia Department of Health; and Wales Cancer Network., (© This is an Open Access article published under the CC BY-NC-ND 3.0 IGO license which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. In any use of this article, there should be no suggestion that WHO endorses any specific organisation, products or services. The use of the WHO logo is not permitted. This notice should be preserved along with the article's original URL.)

Objectives: Opioids modulate the perception of breathlessness with a considerable variation in response, with poor correlation between the required opioid dose and symptom severity. The objective of this hypothesis-generating, secondary analysis was to identify candidate single nucleotide polymorphisms (SNP) from those associated with opioid receptors, signalling or pain modulation to identify any related to intensity of breathlessness while on opioids. This can help to inform prospective studies and potentially lead to better tailoring of opioid therapy for refractory breathlessness., Setting: 17 hospice/palliative care services (tertiary services) in 11 European countries., Participants: 2294 people over 18 years of age on regular opioids for pain related to cancer or its treatment., Primary Outcome Measures: The relationship between morphine dose, breathlessness intensity (European Organisation for Research and Treatment of Cancer Core Quality of Life Questionnaire; EORTCQLQC30 question 8) and 112 candidate SNPs from 25 genes (n=588)., Secondary Outcome Measures: The same measures for people on oxycodone (n=402) or fentanyl (n=429)., Results: SNPs not in Hardy-Weinberg equilibrium or with allele frequencies (<5%) were removed. Univariate associations between each SNP and breathlessness intensity were determined with Benjamini-Hochberg false discovery rate set at 20%. Multivariable ordinal logistic regression, clustering over country and adjusting for available confounders, was conducted with remaining SNPs. For univariate morphine associations, 1 variant on the 5-hydroxytryptamine type 3B (HTR3B) gene, and 4 on the β-2-arrestin gene (ARRB2) were associated with more intense breathlessness. 1 SNP remained significant in the multivariable model: people with rs7103572 SNP (HTR3B gene; present in 8.4% of the population) were three times more likely to have more intense breathlessness (OR 2.86; 95% CIs 1.46 to 5.62; p=0.002). No associations were seen with fentanyl nor with oxycodone., Conclusions: This large, exploratory study identified 1 biologically plausible SNP that warrants further study in the response of breathlessness to morphine therapy., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.)