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Presents letters to the editor on medical topics, published in the October 2003 issue of the U.S.-based periodical "Palliative Medicine." Strategies for recruiting patients into randomized controlled trials of palliative care; Cause of death of patients with brain tumors; Significance of palliative care provided to patients.

Background: Severe and refractory chronic breathlessness is a common and burdensome symptom in patients with advanced life-limiting disease. Its clinical management is challenging because of the lack of effective interventions., Aim: To provide practice recommendations on the safe use of pharmacological therapies for severe chronic breathlessness., Design: Scoping review of (inter)national guidelines and systematic reviews. We additionally searched for primary studies where no systematic review could be identified. Consensus on the recommendations was reached by 75% approval within an international expert panel., Data Sources: Searches in MEDLINE, Cochrane Library and Guideline International Network until March 2023. Inclusion of publications on the use of antidepressants, benzodiazepines, opioids or corticosteroids for chronic breathlessness in adults with cancer, chronic obstructive pulmonary disease, interstitial lung disease or chronic heart failure., Results: Overall, the evidence from eight guidelines, 14 systematic reviews and 3 randomised controlled trials (RCTs) on antidepressants is limited. There is low quality evidence favouring opioids in patients with chronic obstructive pulmonary disease, cancer and interstitial lung disease. For chronic heart failure, evidence is inconclusive. Benzodiazepines should only be considered for anxiety associated with severe breathlessness. Antidepressants and corticosteroids should not be used., Conclusion: Management of breathlessness remains challenging with only few pharmacological options with limited and partially conflicting evidence. Therefore, pharmacological treatment should be reserved for patients with advanced disease under monitoring of side effects, after optimisation of the underlying condition and use of evidence-based non-pharmacological interventions as first-line treatment., Competing Interests: Declaration of conflicting interestsIJH reports grants from EU, Marie Curie Cancer Care, and National Institute for Health and Care Research (NIHR), and is Scientific Director of Cicely Saunders International, NIHR Emeritus Senior Investigator, and is an Honorary Clinical Consultant in Palliative Medicine for hospitals under Kings College Hospital National Health Service Foundation Trust outside of the submitted work. CB and STS report grants from the EU. AOO reports grants from the Medical Research Foundation. MM reports grants from the EU, UKRI, and NIHR. All other authors declare no competing interests.

Background: The COVID pandemic is an example of a crisis challenging healthcare systems worldwide. The impact of the pandemic on providing high-quality palliative care calls for a deeper understanding of specialist services during crises. This is essential in preparation for further crises., Aim: To develop a conceptual understanding of the impact of the pandemic on specialist palliative care as an example for arising future crises., Design: Qualitative interview study across Germany, following a constructivist grounded theory methodology., Setting/participants: Eleven semi-structured interviews with experts with overarching knowledge of structures and processes in specialist palliative care between 05-07/2020 and between 02-06/2021, 23 semi-structured interviews with healthcare professionals working in a specialist palliative care setting., Results: The complex system of palliative care provision during crises has properties that cannot be understood as separated parts of the care process. The pandemic led to unique structural and processual challenges characterized by interconnectedness, uncertainty, dynamic, underlying dilemmas, and unclear long-term goal. In response to the pandemic, teams experienced different phases, which enhanced adaption, innovation, and progress within complex care situations. Creative strategy approaches and dynamic responsiveness facilitated innovative development and could lead to long-lasting improvement within services. Availability of information, transparent communication, comprehensible instructions, participation in decision-making, and search for solutions contributed to teams' proactive development throughout the pandemic., Conclusion: Addressing the complex problems in specialist palliative care caused by crises requires system thinking and a learning mindset. This can facilitate teams to overcome the crisis and move forward rather than bounce back to normal., Competing Interests: Declaration of conflicting interestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: The Integrated Palliative Care Outcome Scale (IPOS) validly and reliably measures symptoms and concerns of those receiving palliative care., Aim: To determine the equivalence of the paper version with an electronic version of the IPOS (eIPOS)., Design: Multicentre randomised crossover trial (NCT03879668) with a within-subject comparison of the two modes (washout period 30 min)., Setting/participants: Convenience sample of specialist inpatient and palliative home care patients aged over 18 years with cancer and non-cancer conditions was recruited. Scores were compared using intraclass correlation coefficients (ICC), Bland-Altman plots and via a mixed-effects analysis of variance., Results: Fifty patients were randomised to complete paper-electronic ( n  = 24) and electronic-paper ( n  = 26) IPOS with median age 69 years (range 24-95), 56% male, 16% non-cancer. The ICCs showed very high concordance for the total score (ICC 0.99, 95% CI 0.98-1.00), lowest ICCs being observed for symptoms 'Appetite loss' and 'Drowsiness' (ICC 0.95, 95% CI 0.92-0.97). Nine of seventeen items had ICCs above 0.98, as did all subscales. No statistically significant mode, order, age, and interaction effects were observed for IPOS total score and subscales, except for 'Communication' ( F mode  = 5.9, p  = 0.019). Fifty-eight percent preferred the electronic version. In the group 75+ years, 53% preferred the paper version. Only three entries in the free-text main problems differed between the versions., Conclusion: The very high equivalence in scores and free text between the IPOS and the eIPOS demonstrates that eIPOS is feasible and reliable in an older palliative population.

Background: Patient-reported outcome measures have the potential to improve outcomes, quality, and effectiveness of care. Digital use of patient-reported outcome measures could be an option to foster implementation in palliative care. The Palli-MONITOR study focused on developing and testing an electronic patient-reported outcome measure in specialised palliative home care. As part of this study, we examined setting-specific challenges for the development of the measure., Aim: We aimed to identify and explore challenges for the development of electronic patient-reported outcome measures as standardised assessment in specialised palliative home care., Design: Qualitative approach with semi-structured interviews and focus groups. Data were thematically analysed using the framework method., Setting/participants: Patients and professionals from five German palliative home care teams., Results: Patients described potential problems in using electronic questionnaires due to their deteriorating health. Answering the electronic questionnaire encouraged patients to reflect on their current palliative situation, which was partly perceived as burdensome. Identified concerns and questions regarding the future roll-out of electronic patient-reported outcome measurement addressed the process of receiving and using the provided information in clinical care routine. Challenging factors on organisational and structural level were the potential undermining of the established 24-h emergency call system and the potential use for patients., Conclusions: Our results provide a multifaceted picture of challenges developing electronic systems for patient-reported outcome measurement in palliative home care on the individual and organisational level. The study underpins the benefit of stakeholder involvement creating digital health innovations and emphasises the importance to therefore mind setting specific culture.

Background: Existing data on sedation at the end of life indicate challenges in the home care setting, leading to deviations from guidelines or non-provision of sedation., Aim: As part of the "SedPall" study, we aimed to explore circumstances in specialist palliative home care, which influence the practice of sedation., Design: Semi-structured qualitative interviews ( n  = 59) and two focus groups ( n  = 4, n  = 5). Recruitment took place via contact persons. We thematically analyzed the transcripts with the Framework Approach, using MAXQDA 2018.2., Setting/participants: Physicians, nurses, and other members of the multiprofessional team from 10 palliative care units and seven home care teams., Results: Participants reported home care specific circumstances that can be categorized into three interrelated topics. (1) Lack of 24/7 on-site availability, (2) active involvement of the family, (3) challenges regarding teamwork and multidisciplinarity. Participants drew different conclusions from the reported circumstances regarding the feasibility of different types of sedation at home: While some reported to generally use all types of sedation, others stated that some types of sedation are not feasible in home care, for example deep sedation until death. Most participants questioned the applicability of existing sedation guidelines in the home care setting., Conclusion: Our data indicate that sedation practices might currently follow the healthcare professional's attitude or service policy rather than the patient's need. To avoid hospital admission in manageable cases and ensure that home care specific best practice standards are met, existing guideline recommendations have to be adapted and supplemented by additional supporting measures specific for the home care setting.

Background: The SARS-CoV-2 pandemic is a constant challenge for health care systems, also in Germany. Care of seriously ill and dying people and their relatives is often neglected and suffering increased due to sub-optimal symptom management, visiting restrictions and lonely dying. The project "Palliative Care in Pandemics (PallPan)" intended to develop a national strategy including evidence- and consensus-based recommendations for the care of seriously ill and dying people and their relatives during pandemic times in Germany., Aim: To reach consensus on evidence-based recommendations for the care of seriously ill and dying people and their relatives in pandemics., Methods: Three-step consensus process comprising two online Delphi rounds and an expert workshop conducted from April to June 2021. One hundred twenty experts from various areas of healthcare, administration, and politics in Germany were included., Results: During the consensus-process, pre-formulated evidence-based recommendations were refined step-by-step. This resulted in consensus on 33 recommendations on the topics of "supporting patients and their relatives," "supporting staff," and "supporting and maintaining structures and provision of palliative care." The recommendations address professional carers and various responsibilities on a governmental, federal state and municipal level, and in healthcare facilities., Conclusion: We provide evidence and consensus-based recommendations for the care of seriously ill and dying people and their relatives in pandemics in Germany. This is an important step towards a pandemic preparedness and hopefully improves the future palliative care response to pandemics.

Background: Since the onset of the SARS CoV2 pandemic, protective and isolation measures had a strong impact on the care and support provided to seriously ill and dying people at the end-of-life., Aim: Exploring bereaved relatives' experiences of end-of-life care during the SARS-CoV2 pandemic., Design: Qualitative interview study with bereaved relatives., Participants: Thirty-two relatives of patients who died during the pandemic, regardless of infection with SARS-CoV2., Results: Three core categories were identified: needs, burden and best practice. Relatives wished for a contact person responsible for providing information on the medical and mental condition of their family members. The lack of information, of support by others and physical closeness due to the visiting restrictions, as well as not being able to say goodbye, were felt as burdens and led to emotional distress. However, case-by-case decisions were made and creative ways of staying in touch were experienced positively., Conclusions: Our results indicate that the strong need for closeness when a family member was dying could not be met due to the pandemic. This led to suffering that can be prevented. Visits need to be facilitated by making considered decisions on a case-by-case basis. For easy communication with relatives, approaches should be made by healthcare professionals and support for virtual communication should be offered. Furthermore, the results of the study can help to implement or develop ideas to enable dignified farewells even during pandemics.

Background: During the COVID-19 pandemic, it has become apparent that palliative care has dynamically adapted to the care of dying patients with and without COVID-19 and has developed new forms of collaboration. Evaluation is needed to assess which innovations should be integrated into future pandemic management., Aim: To explore the experiences of stakeholders and staff in implementing and operating an ad hoc unit delivering acute palliative care. What lessons were learned?, Design: Qualitative interview study (German Clinical Trials Register; identifier 22,473) with qualitative content analysis., Setting/participants: During the first wave of the pandemic, the University Medical Center Freiburg (Germany) established an ad hoc unit delivering acute palliative care for COVID-19 patients likely to die. Nurses from non-palliative areas and the specialist palliative care team formed a new team working together there. Twenty-nine individuals from management and staff of this unit were interviewed., Results: Patient care and teamwork were rated positively. Joint familiarization, bedside teaching, and team/management support were evaluated as core elements for success. Challenges for the nurses from non-palliative settings included adapting to palliative care routines and culture of care. The palliative care team had to adjust the high standards of palliative care to pandemic conditions. Due to sufficient hospital-wide capacity, only three COVID-19 patients were treated, significantly fewer than anticipated at planning., Conclusions: Results show the feasibility of an ad hoc COVID-19 acute palliative care unit. In the event of capacity constraints, such a unit can be a viable part of future pandemic management.

Background: Dementia is a life-limiting disease with high symptom burden. The Integrated Palliative Care Outcome Scale for Dementia (IPOS-Dem) is the first comprehensive person-centered measure to identify and measure palliative care needs of people with dementia. However, such a measure is missing in the German health care system., Aim: To develop a culturally adapted German version of the IPOS-Dem and determine its content validity as a foundation for comprehensive psychometric testing., Design: Cognitive interview study with intermittent analysis and questionnaire adaptation. Interview guide and coding frame followed thematic analysis according to Willis complemented by Tourangeau's model of cognitive aspects of survey methodology: comprehension, retrieval, judgment, response., Participants: Purposive sample with professionals ( n  = 29) and family carers ( n  = 6) of people with advanced dementia in seven nursing homes and person's own home care in four interview rounds ( n  = 11; 10; 7; 7)., Results: IPOS-Dem was regarded as comprehensive and accessible. Cultural adaption pertained to issues of comprehension and judgment. Comprehension challenges referred to the person-centered concept of "being affected by" used in the POS-measures. Judgment problems related to persons with limited communication causing challenges in assessment., Conclusion: Most issues of cultural adaptation could be addressed by questionnaire modifications. However, interviews unveiled fundamental challenges for using proxy reported person-centered assessments. Continuous training on how to use the instrument is imperative to integrate the person-centered approach of palliative care into nursing homes as a key provider of generalist palliative care for people with dementia. The refined version is ready for psychometric testing.

Background: Informal caregivers of palliative patients show higher levels of depression and distress compared with the general population. Fegg's (2013) existential behavioural therapy was shortened to two individual 1-h sessions (short-term existential behavioural therapy)., Aim: Testing the effectiveness of sEBT on psychological symptoms of informal caregivers in comparison with active control., Design: Randomised controlled trial., Setting/participants: Informal caregivers of palliative in-patients., Methods: The primary outcome was depression; secondary outcomes were anxiety, subjective distress and minor mental disorders, positive and negative affect, satisfaction with life, quality of life and direct health care costs. General linear mixed models allow several measurements per participant and change over time. Reasons for declining the intervention were investigated by Rosenstock's Health Belief Model., Results: Overall inclusion rate was 41.0%. Data of 157 caregivers were available (63.1% females; mean age: 54.6 years, standard deviation (SD): 14.1); 127 participants were included in the main analysis. Participation in sEBT or active control was not significantly associated with post-treatment depression. Outcomes showed prevailingly significant association with time of investigation. Self-efficacy, scepticism of benefit of the intervention, belief of better coping alone and support by family and friends were significant factors in declining participation in the randomised controlled trial., Conclusion: Inclusion rate was tripled compared with a previously evaluated longer EBT group intervention. By shortening the intervention, inclusion rate was traded for effectiveness and the intervention could not impact caregivers' psychological state. Early integration of sEBT and combination of individual and group setting and further study of the optimal length for caregiver interventions are suggested.

Background: Few measures capture the complex symptoms and concerns of those receiving palliative care., Aim: To validate the Integrated Palliative care Outcome Scale, a measure underpinned by extensive psychometric development, by evaluating its validity, reliability and responsiveness to change., Design: Concurrent, cross-cultural validation study of the Integrated Palliative care Outcome Scale - both (1) patient self-report and (2) staff proxy-report versions. We tested construct validity (factor analysis, known-group comparisons, and correlational analysis), reliability (internal consistency, agreement, and test-retest reliability), and responsiveness (through longitudinal evaluation of change)., Setting/participants: In all, 376 adults receiving palliative care, and 161 clinicians, from a range of settings in the United Kingdom and Germany., Results: We confirm a three-factor structure (Physical Symptoms, Emotional Symptoms and Communication/Practical Issues). Integrated Palliative care Outcome Scale shows strong ability to distinguish between clinically relevant groups; total Integrated Palliative care Outcome Scale and Integrated Palliative care Outcome Scale subscale scores were higher - reflecting more problems - in those patients with 'unstable' or 'deteriorating' versus 'stable' Phase of Illness (F = 15.1, p < 0.001). Good convergent and discriminant validity to hypothesised items and subscales of the Edmonton Symptom Assessment System and Functional Assessment of Cancer Therapy-General is demonstrated. The Integrated Palliative care Outcome Scale shows good internal consistency (α = 0.77) and acceptable to good test-retest reliability (60% of items k w  > 0.60). Longitudinal validity in form of responsiveness to change is good., Conclusion: The Integrated Palliative care Outcome Scale is a valid and reliable outcome measure, both in patient self-report and staff proxy-report versions. It can assess and monitor symptoms and concerns in advanced illness, determine the impact of healthcare interventions, and demonstrate quality of care. This represents a major step forward internationally for palliative care outcome measurement.

Background: Drug use beyond the licence (off-label use, off-label drug use) is a common practice in palliative care and respective recommendations can often be identified in the literature. It is both risky and offers opportunities at the same time and, therefore, requires special attention in clinical practice., Aim: To determine the prevalence of off-label drug use in palliative care and to identify, evaluate and critically appraise studies describing the clinical practice, healthcare professionals' awareness, knowledge and attitudes towards off-label-use and management strategies., Design: Systematic literature review following the guidance of the Centre for Reviews and Dissemination., Data Sources: Medline, Embase, Web of Science and Current Contents Connect were searched in July 2018 as well as hand searches. The reference lists of pertinent studies were screened for further relevant publications, and citation tracking was performed., Results: Eight studies met the inclusion criteria. Due to the variety in study designs and settings, no meta-analysis or meaningful statistical analysis was possible and a narrative synthesis of the data was performed. Frequency of off-label drug use ranged from 14.5% to 35%. Up to 97% of palliative care units did not have any policy or guidance on handling off-label drug use. About 20% of prescribers never obtain consent in the context of off-label use., Conclusion: Off-label use is common in palliative care with up to one-third of prescriptions affected. Challenges are often related to obtaining informed consent. Little is known about the decision-making process. More information and guidance for the prescribers are needed to enable safe handling of drugs outside their licence in palliative care.

Background: Chronic breathlessness is a neglected symptom of advanced diseases., Aim: To examine the effect of airflow for chronic breathlessness relief., Design: Exploratory systematic review and meta-analysis., Data Sources: Medline, CINAHL, AMED and Cochrane databases were searched (1985-2018) for observational studies or randomised controlled trials of airflow as intervention or comparator. Selection against predefined inclusion criteria, quality appraisal and data extraction was conducted by two independent reviewers with access to a third for unresolved differences. 'Before and after' breathlessness measures from airflow arms were analysed. Meta-analysis was carried out where possible., Results: In all, 16 of 78 studies (n = 929) were included: 11 randomised controlled trials of oxygen versus medical air, 4 randomised controlled trials and 1 fan cohort study. Three meta-analyses were possible: (1) Fan at rest in three studies (n = 111) offered significant benefit for breathlessness intensity (0-100 mm visual analogue scale and 0-10 numerical rating scale), mean difference -11.17 (95% confidence intervals (CI) -16.60 to -5.74), p = 0.06 I 2 64%. (2) Medical air via nasal cannulae at rest in two studies (n = 89) improved breathlessness intensity (visual analogue scale), mean difference -12.0 mm, 95% CI -7.4 to -16.6, p < 0.0001 I 2  = 0%. (3) Medical airflow during a constant load exercise test before and after rehabilitation (n = 29) in two studies improved breathlessness intensity (modified Borg scale, 0-10), mean difference -2.9, 95% CI -3.2 to -2.7, p < 0.0001 I 2  = 0%., Conclusion: Airflow appears to offer meaningful relief of chronic breathlessness and should be considered as an adjunct treatment in the management of breathlessness.

Background: Sedatives are frequently used towards the end of life. However, there is scarce information when their use is labelled as 'palliative sedation'., Aim: To assess the use and labelling of 'continuous administration of sedatives within the last 7 days of life', based on objective operational criteria, on a palliative care unit., Design: Retrospective cohort study, using medical records. Explorative statistical analysis (SPSS 23)., Setting/participants: Patients who died on a palliative care unit from August 2014 to July 2015. Sedatives recorded were benzodiazepines, levomepromazine, haloperidol ⩾5 mg/day and propofol., Results: Of the 192 patients, 149 (78%) patients received continuous sedatives within the last week of life. The prevalence of delirium/agitation was significantly higher in patients with continuous sedatives compared to those without continuous sedatives at admission to the unit (35% vs 16%, p = 0.02) and on the day before death (58% vs 40%, p = 0.04). The term '(palliative) sedation' was used in the records for 22 of 149 (15%) patients with continuous sedatives. These patients had significantly higher total daily midazolam doses 2 days before death (median (range), 15.0 (6.0-185.0) mg vs 11.5 (1.0-70.0) mg, p = 0.04) and on the day of death (median (range), 19.5 (7.5-240.0) mg vs 12.5 (2.0-65.0) mg, p = 0.01). The dose range was large in both groups., Conclusion: The prevalence of delirium/agitation was associated with the administration of continuous sedatives. There was no consistent pattern regarding labelling the use of continuous sedatives as '(palliative) sedation'. Multicentre mixed-methods research is needed for a better characterization of sedation practices in palliative care.

Background: The London Chest Activities of Daily Living Scale measures the impact of breathlessness on both activity and social functioning. However, the London Chest Activities of Daily Living Scale is not routinely used in patients with advanced disease., Aim: To assess the psychometric properties of the London Chest Activities of Daily Living Scale in patients with refractory breathlessness due to advanced disease., Design: A cross-sectional secondary analysis of data from a randomised controlled parallel-group, pragmatic, single-blind fast-track trial (randomised controlled trial) investigating the effectiveness of an integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness, known as the Breathlessness Support Service (NCT01165034). All patients completed the following questionnaires: the London Chest Activities of Daily Living Scale, Chronic Respiratory Questionnaire, the Palliative care Outcome Scale, Palliative care Outcome Scale-symptoms, the Hospital Anxiety and Depression Scale and breathlessness measured on a numerical rating scale. Data quality, scaling assumptions, acceptability, internal consistency and construct validity of the London Chest Activities of Daily Living Scale were determined using standard psychometric approaches., Setting/participants: Breathless patients with advanced malignant and non-malignant disease., Results: A total of 88 patients were studied, primary diagnosis included; chronic obstructive pulmonary disease = 53, interstitial lung disease = 17, cancer = 18. Median (range) London Chest Activities of Daily Living Scale total score was 46.5 (14-67). No floor or ceiling effect was observed for the London Chest Activities of Daily Living Scale total score. Internal consistency was good, and Cronbach's alpha for the London Chest Activities of Daily Living Scale total score was 0.90. Construct validity was good with 13 out of 15 a priori hypotheses met., Conclusion: Psychometric analyses suggest that the London Chest Activities of Daily Living Scale is acceptable, reliable and valid in patients with advanced disease and refractory breathlessness.

Background: Refractory breathlessness in advanced chronic disease leads to high levels of disability, anxiety and social isolation. These result in high health-resource use, although this is not quantified., Aims: To measure the cost of care for patients with advanced disease and refractory breathlessness and to identify factors associated with high costs., Design: A cross-sectional secondary analysis of data from a randomised controlled trial., Setting/participants: Patients with advanced chronic disease and refractory breathlessness recruited from three National Health Service hospitals and via general practitioners in South London., Results: Of 105 patients recruited, the mean cost of formal care was £3253 (standard deviation £3652) for 3 months. The largest contributions to formal-care cost were hospital admissions (>60%), and palliative care contributed <1%. When informal care was included, the total cost increased by >250% to £11,507 (standard deviation £9911). Increased patient disability resulting from breathlessness was associated with high cost (£629 per unit increase in disability score; p = 0.006). Increased breathlessness on exertion and the presence of an informal carer were also significantly associated with high cost. Patients with chronic obstructive pulmonary disease tended to have higher healthcare costs than other patients., Conclusion: Informal carers contribute significantly to the care of patients with advanced disease and refractory breathlessness. Disability resulting from breathlessness is an important clinical cost driver. It is important for policy makers to support and acknowledge the contributions of informal carers. Further research is required to assess the clinical- and cost-effectiveness of palliative care interventions in reducing disability resulting from breathlessness in this patient group.

Background: Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them., Aim: To assess national models and methods for financing and reimbursing palliative care., Design: Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms., Results: Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs., Conclusion: Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest.

Background: Dipyrone (metamizole) is one of the most widely used non-opioid analgesics for the treatment of cancer pain., Aim: Because evidence-based recommendations are not yet available, a systematic review was conducted for the German Guideline Program in Oncology to provide recommendations for the use of dipyrone in cancer pain., Design: First, a systematic review for clinical trials assessing dipyrone in adult patients with cancer pain was conducted. Endpoints were pain intensity, opioid-sparing effects, safety, and quality of life., Data Sources: The search was performed in MedLine, Embase (via Ovid), and the Cochrane Library (1948-2013) and additional hand search was conducted. Finally, recommendations were developed and agreed in a formal structured consensus process by 53 representatives of scientific medical societies and 49 experts., Results: Of 177 retrieved studies, 4 could be included (3 randomized controlled trials and 1 cohort study, n = 252 patients): dipyrone significantly decreased pain intensity compared to placebo, even if low doses (1.5-2 g/day) were used. Higher doses (3 × 2 g/day) were more effective than low doses (3 × 1 g/day), but equally effective as 60 mg oral morphine/day. Pain reduction of dipyrone and non-steroidal anti-inflammatory drugs did not differ significantly. Compared to placebo, non-steroidal anti-inflammatory drugs, and morphine, the incidence of adverse effects was not increased., Conclusion: Dipyrone can be recommended for the treatment of cancer pain as an alternative to other non-opioids either alone or in combination with opioids. It can be preferred over non-steroidal anti-inflammatory drugs due to the presumably favorable side effect profile in long-term use, but comparative studies are not available for long-term use.

Background: The Integrated Palliative care Outcome Scale is a newly developed advancement of the Palliative care Outcome Scale. It assesses patient-reported symptoms and other concerns. Cognitive interviewing is recommended for questionnaire refinement but not adopted widely in palliative care research., Aim: To explore German- and English-speaking patients' views on the Integrated Palliative care Outcome Scale with a focus on comprehensibility and acceptability, and subsequently refine the questionnaire., Methods: Bi-national (United Kingdom/Germany) cognitive interview study using 'think aloud' and verbal probing techniques. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis and pre-defined categories. Results from both countries were collated and discussed. The Integrated Palliative care Outcome Scale was then refined by consensus., Setting/participants: Purposely sampled patients from four palliative care teams in palliative care units, general hospital wards and in the community., Results: A total of 15 German and 10 UK interviews were conducted. Overall, comprehension and acceptability of the Integrated Palliative care Outcome Scale were good. Identified difficulties comprised the following: (1) comprehension problems with specific terms (e.g. 'mouth problems') and length of answer options; (2) judgement difficulties, for example, due to the 3-day recall for questions; and (3) layout problems. Combining the results from both countries (e.g. regarding 'felt good about yourself') and discussing them from both languages' perspectives resulted in wider consideration of the items' meaning, enabling more detailed refinement., Conclusion: Cognitive interviewing proved valuable to increase face and content validity of the questionnaire. The concurrent approach in two languages - to our knowledge the first such approach in palliative care - benefited the refinement. Psychometric validation of the refined Integrated Palliative care Outcome Scale is now underway., (© The Author(s) 2015.)

Background: We developed a new single point of access to integrated palliative care, respiratory medicine and physiotherapy: the breathlessness support service for patients with advanced disease and refractory breathlessness. This study aimed to describe patients' experiences of the service and identify the aspects valued., Design: We attempted to survey all patients who had attended and completed the 6-week breathlessness support service intervention by sending them a postal questionnaire to self-complete covering experience, composition, effectiveness of the BSS and about participation in research. Data were analysed using descriptive statistics and thematic analysis of free text comments., Results: Of the 70 postal questionnaires sent out, 25 (36%) returned. A total of 21 (84% (95% confidence interval: 69%-98%)) responding patients reported that they definitely found the breathlessness support service helpful and 13 (52% (95% confidence interval: 32%-72%)) rated the breathlessness support service as excellent. A total of 21 (84% (95% confidence interval: 69%-98%)) patients reported that the breathlessness support service helped with their management of their breathlessness along with additional symptoms and activities (e.g. mood and mobility). Four key themes were identified: (1) personalised care, (2) caring nature of the staff, (3) importance of patient education to empower patients and (4) effectiveness of context-specific breathlessness interventions. These were specific aspects that patients valued., Conclusion: Patients' satisfaction with the breathlessness support service was high, and identified as important to this was a combination of personalised care, nature of staff, education and empowerment, and use of specific interventions. These components would be important in any future breathlessness service., (© The Author(s) 2015.)

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., (© The Author(s) 2015.)

Background: Episodic breathlessness is one form of refractory breathlessness. Better understanding of the symptom is necessary for effective management., Aim: The aim was to describe the characteristics of episodic breathlessness in patients with advanced chronic obstructive pulmonary disease or lung cancer., Design: This is a longitudinal cohort study. Outcomes were assessed monthly by up to 13 telephone interviews: peak severity (modified Borg scale: 0-10), duration, frequency, and timing of breathlessness episodes. Data from each episode were pooled and analyzed using descriptive statistics. Associations between outcomes were explored by correlation coefficients., Setting/participants: Patients with chronic obstructive pulmonary disease (Global Initiative for Chronic Obstructive Lung Disease classification stage III or IV) or primary lung cancer (any stage) were recruited in two inpatient units (internal medicine) and two outpatient clinics in Oldenburg, Germany., Results: A total of 82 patients (50 chronic obstructive pulmonary disease, 32 lung cancer), mean age (standard deviation) 67 years (8 years) and 36% female, were included reporting on 592 breathlessness episodes (chronic obstructive pulmonary disease: 403, lung cancer: 189). Peak severity was perceived significantly higher in chronic obstructive pulmonary disease patients than in lung cancer patients (mean (standard deviation) Borg scale: 6.2 (2.1) vs 4.2 (1.9); p < 0.001). Episodes described by chronic obstructive pulmonary disease patients were longer than those described by lung cancer patients (median (range): 7 min (0-600) vs 5 min (0.3-120), p = 0.002)). Frequency was similar and most often daily in both groups. Severity and frequency of episodes were correlated in lung cancer patients (r = 0.324, p = 0.009)., Conclusion: Most breathlessness episodes are short (minutes) and severe with significant differences between chronic obstructive pulmonary disease and lung cancer patients. Effective management strategies are warranted to improve symptom relief and coping., (© The Author(s) 2015.)

Background: One of the barriers identified in palliative care research is the lack of common criteria to describe the population., Aim: The aim of this Delphi process was to obtain consensus on a basic set of core variables to describe or classify a palliative care cancer population., Design and Setting: This was a five-step international Delphi exercise. A total of 117 experts were invited to participate. Based on a literature review and analyses of existing minimum datasets for national databases, a list of 18 proposed variables was presented in the first Delphi round. The two first rounds focused on which variables to include, and several new variables were proposed. The three last Delphi rounds focused on how the agreed variables should be recorded. Consensus was defined as at least 70% agreement., Results: A total of 64 experts from 30 countries participated. High consensus was reached on 31 variables, divided between a 'patient form' - date of birth, gender, living situation, education, ethnicity and 12 symptoms - and a 'health-care personnel form' - patient's date of birth, principal diagnosis, date of the principal diagnosis, stage of the cancer disease, site of metastases, present anticancer treatment, main additional diagnoses, stage of the additional diagnoses, medication, weight loss, performance status, cognitive impairment, place of care and provision of care. It was more difficult to agree upon how to record the variables, but consensus was reached on all except ethnicity, vomiting and weight loss., Conclusion: Consensus was reached on a set of core variables and how they should be recorded.

Background: Health-care costs are growing, with little population-based data about people's priorities for end-of-life care, to guide service development and aid discussions., Aim: We examined variations in people's priorities for treatment, care and information across seven European countries., Design: Telephone survey of a random sample of households; we asked respondents their priorities if 'faced with a serious illness, like cancer, with limited time to live' and used multivariable logistic regressions to identify associated factors., Setting/participants: Members of the general public aged ≥ 16 years residing in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain., Results: In total, 9344 individuals were interviewed. Most people chose 'improve quality of life for the time they had left', ranging from 57% (95% confidence interval: 55%-60%, Italy) to 81% (95% confidence interval: 79%-83%, Spain). Only 2% (95% confidence interval: 1%-3%, England) to 6% (95% confidence interval: 4%-7%, Flanders) said extending life was most important, and 15% (95% confidence interval: 13%-17%, Spain) to 40% (95% confidence interval: 37%-43%, Italy) said quality and extension were equally important. Prioritising quality of life was associated with higher education in all countries (odds ratio = 1.3 (Flanders) to 7.9 (Italy)), experience of caregiving or bereavement (England, Germany, Portugal), prioritising pain/symptom control over having a positive attitude and preferring death in a hospice/palliative care unit. Those prioritising extending life had the highest home death preference of all groups. Health status did not affect priorities., Conclusions: Across all countries, extending life was prioritised by a minority, regardless of health status. Treatment and care needs to be reoriented with patient education and palliative care becoming mainstream for serious conditions such as cancer.

Background: Understanding the need for palliative care is essential in planning services., Aim: To refine existing methods of estimating population-based need for palliative care and to compare these methods to better inform their use., Design: (1) Refinement of existing population-based methods, based on the views of an expert panel, and (2) application/comparison of existing and refined approaches in an example dataset. Existing methods vary in approach and in data sources. (a) Higginson used cause of death/symptom prevalence, and using pain prevalence, estimates that 60.28% (95% confidence interval = 60.20%-60.36%) of all deaths need palliative care, (b) Rosenwax used the International Statistical Classification of Diseases and Related Health Problems-10th Revision (ICD-10) causes of death/hospital-use data, and estimates that 37.01% (95% confidence interval = 36.94%-37.07%) to 96.61% (95% confidence interval = 96.58%-96.64%) of deaths need palliative care, and (c) Gómez-Batiste used percentage of deaths plus chronic disease data, and estimates that 75% of deaths need palliative care., Setting/participants: All deaths in England, January 2006-December 2008, using linked mortality and hospital episode data., Results: Expert panel review identified changing practice (e.g. extension of palliative care to more non-cancer conditions), changing patterns of hospital/home care and multiple, rather than single, causes of death as important. We therefore refined methods (using updated ICD-10 causes of death, underlying/contributory causes, and hospital use) to estimate a minimum of 63.03% (95% confidence interval = 62.95%-63.11%) of all deaths needing palliative care, with lower and upper mid-range estimates between 69.10% (95% confidence interval = 69.02%-69.17%) and 81.87% (95% confidence interval = 81.81%-81.93%)., Conclusions: Death registration data using both underlying and contributory causes can give reliable estimates of the population-based need for palliative care, without needing symptom or hospital activity data. In high-income countries, 69%-82% of those who die need palliative care.

Background: Despite the high prevalence and impact of episodic breathlessness, information about characteristics and patterns is scarce., Aim: To explore the experience of patients with advanced disease suffering from episodic breathlessness, in order to describe types and patterns., Design and Participants: Qualitative design using in-depth interviews with patients suffering from advanced stages of chronic heart failure, chronic obstructive pulmonary disease, lung cancer or motor neurone disease. As part of the interviews, patients were asked to draw a graph to illustrate typical patterns of breathlessness episodes. Interviews were tape-recorded, transcribed verbatim and analysed using Framework Analysis. The graphs were grouped according to their patterns., Results: Fifty-one participants (15 chronic heart failure, 14 chronic obstructive pulmonary disease, 13 lung cancer and 9 motor neurone disease) were included (mean age 68.2 years, 30 of 51 men, mean Karnofsky 63.1, mean breathlessness intensity 3.2 of 10). Five different types of episodic breathlessness were described: triggered with normal level of breathlessness, triggered with predictable response (always related to trigger level, e.g. slight exertion causes severe breathlessness), triggered with unpredictable response (not related to trigger level), non-triggered attack-like (quick onset, often severe) and wave-like (triggered or non-triggered, gradual onset). Four patterns of episodic breathlessness could be identified based on the graphs with differences regarding onset and recovery of episodes. These did not correspond with the types of breathlessness described before., Conclusion: Patients with advanced disease experience clearly distinguishable types and patterns of episodic breathlessness. The understanding of these will help clinicians to tailor specific management strategies for patients who suffer from episodes of breathlessness.

Background: The Council of Europe has recommended that member states of European Union encourage their citizens to make decisions about their healthcare before they lose capacity to do so. However, it is unclear whether the public wants to make such decisions beforehand., Aim: To examine public preferences for self-involvement in end-of-life care decision-making and identify associated factors., Design: A population-based survey with 9344 adults in England, Belgium, Germany, Italy, the Netherlands, Portugal and Spain., Results: Across countries, 74% preferred self-involvement when capable; 44% preferred self-involvement when incapable through, for example, a living will. Four factors were associated with a preference for self-involvement across capacity and incapacity scenarios, respectively: higher educational attainment ((odds ratio = 1.93-2.77), (odds ratio = 1.33-1.80)); female gender ((odds ratio = 1.27, 95% confidence interval = 1.14-1.41), (odds ratio = 1.30, 95% confidence interval = 1.20-1.42)); younger-middle age ((30-59 years: odds ratio = 1.24-1.40), (50-59 years: odds ratio = 1.23, 95% confidence interval = 1.04-1.46)) and valuing quality over quantity of life or valuing both equally ((odds ratio = 1.49-1.58), (odds ratio = 1.35-1.53)). Those with increased financial hardship (odds ratio = 0.64-0.83) and a preference to die in hospital (not a palliative care unit) (odds ratio = 0.73, 95% confidence interval = 0.60-0.88), a nursing home or residential care (odds ratio = 0.73, 95% confidence interval = 0.54-0.99) were less likely to prefer self-involvement when capable. For the incapacity scenario, single people were more likely to prefer self-involvement (odds ratio = 1.34, 95% confidence interval = 1.18-1.53)., Conclusions: Self-involvement in decision-making is important to the European public. However, a large proportion of the public prefer to not make decisions about their care in advance of incapacity. Financial hardship, educational attainment, age, and preferences regarding quality and quantity of life require further examination; these factors should be considered in relation to policy.

Breathlessness is a distressing symptom in advanced disease. Little is known about the trajectories of this symptom over time and towards death. This study aimed to describe and compare the summary and individual trajectories of breathlessness and overall symptom burden over time and towards the end of life following patients with advanced cancer or severe chronic obstructive pulmonary disease (COPD) in inpatient and outpatient health care settings in Germany. The modified Borg Scale, Memorial Symptom Assessment Scale Short Form and Palliative Outcome Scale were used as outcome measures. Data were collected at baseline and then monthly over six months or until death. Forty-nine cancer and 60 COPD patients were included. Both groups had similar demographics. Thirty out of the 49 cancer and 6/60 COPD patients died, 7/49 cancer and 20/60 COPD patients dropped out due to physical deterioration or questionnaire fatigue. In cancer patients, breathlessness increased towards death. In COPD patients, breathlessness increased over time. Twenty-one cancer and 43 COPD patients provided data for individual breathlessness trajectories. These revealed wide individual variations with four different patterns: fluctuation, increasing, stable and decreasing breathlessness. Symptom trajectories on the population level reflecting the whole group mask individual variation, which is reflected in distinct symptom trajectories with different patterns.

The development of palliative medicine in inpatient units in Germany has been impressive in the last years. As a first step of quality assurance, a core documentation form was developed in 1996. In 2001, 55 of the 83 palliative inpatient units in Germany and one unit each in Switzerland and Austria participated in the third phase of the evaluation of the core documentation. A total of 1304 patients were documented consecutively in the 57 units for a period of up to three months. This study investigates the frequency of drugs used in palliative care units in Germany. During inpatient treatment, the most common drug classes were strong opioids (68% of the patients), nonopioids (59%), corticosteroids (32%), laxatives (31%), antiemetics (27%), gastric protection agents (24%), neuroleptics (19%), sedatives/anxiolytics (18%), antidepressants (16%) and diuretics (15%). These ten drug classes made up for 72% of all prescriptions in the palliative care units. The substances used most frequently were dipyrone (47% of the patients), morphine (42%), fentanyl (28%), dexamethasone (27%), metoclopramide (21%), sodium picosulfate (15%), haloperidol (13%), pantoprazole (11%), macrogol (11%), amtriptyline (11%), furosemide (10%), omeprazole (9%), lactulose (8%), rofecoxib (8%) and lorazepam (7%). The 15 most commonly used drugs accounted for 54% of the prescriptions in the palliative care units in Germany. Drug treatment was related to sex, age and functional status of the patients. Patients who died in a palliative care unit had received significantly more frequent doses of neuroleptics (P < 0.001), corticosteroids (P < 0.001), sedatives/anxiolytics (P < 0.001) and strong opioids (P < 0.001). This study is the first representative and systematic evaluation of drug treatment in palliative care units in a European country. Many of the 'top 15' drugs were drugs included in the list of essential drugs of the World Health Organisation though availability and cultural differences have an effect on the use of drugs, e.g., the high usage of dipyrone in Germany. Age and sex-related differences in drug therapy were seen, and more research is needed to recognize possible undertreatment of symptoms in subgroups of patients, e.g., treatment of depression in older or male patients.