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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. [ABSTRACT FROM AUTHOR]

Background: Heart failure (HF) is increasingly prevalent in the growing elderly population and commonly associated with cognitive impairment. We compared trends in place of death (PoD) of HF patients with/without comorbid dementia around the implementation period of the Mental Capacity Act (MCA) in October 2007, this legislation supporting patient-centred decision making for those with reduced agency. Methods: Analyses of death certification data for England between January 2001 and December 2018, describing the PoD and sociodemographic characteristics of all people ≥ 65 years registered with HF as the underlying cause of death, with/without a mention of comorbid dementia. We used modified Poisson regression with robust error variance to determine the prevalence ratio (PR) of the outcome in dying at home, in care homes or hospices compared to dying in hospital. Covariates included year of death, age, gender, marital status, comorbidity burden, index of multiple deprivation and urban/rural settings. Results: One hundred twenty thousand sixty-eight HF-related death records were included of which 8199 mentioned dementia as a contributory cause. The overall prevalence proportion of dementia was 6.8%, the trend significantly increasing from 5.6 to 8.0% pre- and post-MCA (Cochran-Armitage trend test p < 0.0001). Dementia was coded as unspecified (78.2%), Alzheimer's disease (13.5%) and vascular (8.3%). Demented decedents were commonly older, female, and with more comorbidities. Pre-MCA, PoD for non-demented HF patients was hospital 68.2%, care homes 20.2% and 10.7% dying at home. Corresponding figures for those with comorbid dementia were 47.6%, 48.0% and 4.2%, respectively. Following MCA enforcement, PoD for those without dementia shifted from hospital to home, 62.5% and 17.2%, respectively; PR: 1.026 [95%CI: 1.024–1.029]. While home deaths also rose to 10.0% for those with dementia, with hospital deaths increasing to 50.4%, this trend was insignificant, PR: 1.001 [0.988–1.015]. Care home deaths reduced for all, with/without dementia, PR: 0.959 [0.949–0.969] and PR: 0.996 [0.993–0.998], respectively. Hospice as PoD was rare for both groups with no appreciable change over the study period. Conclusions: Our analyses suggest the MCA did not materially affect the PoD of HF decedents with comorbid dementia, likely reflecting difficulties implementing this legislation in real-life clinical practice. [ABSTRACT FROM AUTHOR]

Context: Evidence of symptom control outcomes in severe COVID is scant.Objectives: To determine changes in symptoms among people severely ill or dying with COVID supported by palliative care, and associations with treatments and survival.Methods: Multicentre cohort study of people with COVID across England and Wales supported by palliative care services, during the pandemic in 2020 and 2021. We analysed clinical, demographic and survival data, symptom severity at baseline (referral to palliative care, first COVID assessment) and at three follow-up assessments using the Integrated Palliative care Outcome Scale - COVID version.Results: We included 572 patients from 25 services, mostly hospital support teams; 496 (87%) were newly referred to palliative care with COVID, 75 (13%) were already supported by palliative care when they contracted COVID. At baseline, patients had a mean of 2.4 co-morbidities, mean age 77 years, a mean of five symptoms, and were often bedfast or semiconscious. The most prevalent symptoms were: breathlessness, weakness/lack of energy, drowsiness, anxiety, agitation, confusion/delirium, and pain. Median time in palliative care was 46 hours; 77% of patients died. During palliative care, breathlessness, agitation, anxiety, delirium, cough, fever, pain, sore/dry mouth and nausea improved; drowsiness became worse. Common treatments were low dose morphine and midazolam. Having moderate to severe breathlessness, agitation and multimorbidity were associated with shorter survival.Conclusion: Symptoms of COVID quickly improved during palliative care. Breathlessness, agitation and multimorbidity could be used as triggers for timelier referral, and symptom guidance for wider specialities should build on treatments identified in this study. [ABSTRACT FROM AUTHOR]

Further, there has been an important distinction drawn between the primary palliative care that is provided by any clinician caring for a patient with life-threatening illness and the specialty palliative care provided by those with specialty training in palliative care [[3]]. The specialty palliative care workforce will never be such that all patients and families in the ICU with palliative care needs can be seen by specialists. It is also important to consider tools to help ICU clinicians in delivery of primary palliative care, for example the Psychosocial Assessment and Communication Evaluation (PACE), which seeks to improve communication and palliative care in the ICU [[16]]. From the inception of the intensive care unit (ICU), end-of-life care has always been delivered in this setting due to the high severity of illness of the patients. [Extracted from the article]

Background: Heart failure (HF) is increasingly prevalent in the growing elderly population and commonly associated with cognitive impairment. We compared trends in place of death (PoD) of HF patients with/without comorbid dementia around the implementation period of the Mental Capacity Act (MCA) in October 2007, this legislation supporting patient-centred decision making for those with reduced agency.Methods: Analyses of death certification data for England between January 2001 and December 2018, describing the PoD and sociodemographic characteristics of all people ≥ 65 years registered with HF as the underlying cause of death, with/without a mention of comorbid dementia. We used modified Poisson regression with robust error variance to determine the prevalence ratio (PR) of the outcome in dying at home, in care homes or hospices compared to dying in hospital. Covariates included year of death, age, gender, marital status, comorbidity burden, index of multiple deprivation and urban/rural settings.Results: One hundred twenty thousand sixty-eight HF-related death records were included of which 8199 mentioned dementia as a contributory cause. The overall prevalence proportion of dementia was 6.8%, the trend significantly increasing from 5.6 to 8.0% pre- and post-MCA (Cochran-Armitage trend test p < 0.0001). Dementia was coded as unspecified (78.2%), Alzheimer's disease (13.5%) and vascular (8.3%). Demented decedents were commonly older, female, and with more comorbidities. Pre-MCA, PoD for non-demented HF patients was hospital 68.2%, care homes 20.2% and 10.7% dying at home. Corresponding figures for those with comorbid dementia were 47.6%, 48.0% and 4.2%, respectively. Following MCA enforcement, PoD for those without dementia shifted from hospital to home, 62.5% and 17.2%, respectively; PR: 1.026 [95%CI: 1.024-1.029]. While home deaths also rose to 10.0% for those with dementia, with hospital deaths increasing to 50.4%, this trend was insignificant, PR: 1.001 [0.988-1.015]. Care home deaths reduced for all, with/without dementia, PR: 0.959 [0.949-0.969] and PR: 0.996 [0.993-0.998], respectively. Hospice as PoD was rare for both groups with no appreciable change over the study period.Conclusions: Our analyses suggest the MCA did not materially affect the PoD of HF decedents with comorbid dementia, likely reflecting difficulties implementing this legislation in real-life clinical practice. [ABSTRACT FROM AUTHOR]

Background: Hospital admissions among people dying with dementia are common. It is not known whether identification of palliative care needs could help prevent unnecessary admissions. Aim: To examine the proportion of people with dementia identified as having palliative care needs in their last year of life, and the association between identification of needs and primary, community and hospital services in the last 90 days. Design: Retrospective cohort study using Discover, an administrative and clinical dataset from 365 primary care practices in London with deterministic individual-level data linkage to community and hospital records. Setting/participants: People diagnosed with dementia and registered with a general practitioner in North West London (UK) who died between 2016 and 2019. The primary outcome was multiple non-elective hospital admissions in the last 90 days of life. Secondary outcomes included contacts with primary and community care providers. We examined the association between identification of palliative care needs with outcomes. Results: Among 5804 decedents with dementia, 1953 (33.6%) were identified as having palliative care needs, including 1141 (19.7%) identified before the last 90 days of life. Identification of palliative care needs before the last 90 days was associated with a lower risk of multiple hospital admissions (Relative Risk 0.70, 95% CI 0.58–0.85) and more contacts with the primary care practice, community nurses and palliative care teams in the last 90 days. Conclusions: Further investigation of the mechanisms underlying the association between identification of palliative care needs and reduced hospital admissions could help reduce reliance on acute care for this population. [ABSTRACT FROM AUTHOR]

Background: At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality.Methods: Mortality follow-back postal survey.Setting: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco).Participants: Informal carers (ICrs) of decedents who had received palliative care.Data: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG).Analysis: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief.Results: We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66-76 h per week from ICrs for 'being on call', 52-55 h for ICrs being with them, 19-21 h for personal care, 17-21 h for household tasks, 15-18 h for medical procedures and 7-10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden.Conclusions: Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment. [ABSTRACT FROM AUTHOR]

Background transitions between care settings near the end-of-life for people with dementia can be distressing, lead to physical and cognitive deterioration, and may be avoidable. Objective to investigate determinants of end-of-life hospital transitions, and association with healthcare use, among people with dementia. Design retrospective cohort study. Setting electronic records from a mental health provider in London, linked to national mortality and hospital data. Subjects people with dementia who died in 2007–2016. Methods end-of-life hospital transitions were defined as: multiple admissions in the last 90 days (early), or any admission in the last three days of life (late). Determinants were assessed using logistic regression. Results of 8,880 people, 1,421 (16.0%) had at least one end-of-life transition: 505 (5.7%) had early, 788 (8.9%) late, and 128 (1.5%) both types. Early transitions were associated with male gender (OR 1.33, 95% CI 1.11–1.59), age (>90 vs <75 years OR 0.69, 95% CI 0.49–0.97), physical illness (OR 1.52, 95% CI 1.20–1.94), depressed mood (OR 1.49, 95% CI 1.17–1.90), and deprivation (most vs least affluent quintile OR 0.58, 95% CI 0.37–0.90). Care home residence was associated with fewer early (OR 0.63, 95% CI 0.53 to 0.76) and late (OR 0.80, 95% CI 0.65 to 0.97) transitions. Early transitions were associated with more hospital admissions throughout the last year of life compared to those with late and no transitions (mean 4.56, 1.89, 1.60; P < 0.001). Conclusions in contrast to late transitions, early transitions are associated with higher healthcare use and characteristics that are predictable, indicating potential for prevention. [ABSTRACT FROM AUTHOR]

Background: Assessment of people with dementia is challenging; with undetected and under treated symptoms and concerns resulting in avoidable distress, and few evidence-based interventions to support this. We aimed to understand the mechanisms of action of a measure to support comprehensive assessment of people with dementia in care homes; and its acceptability, feasibility, and implementation requirements. Methods: A qualitative study with an embedded quantitative component in three residential care homes, underpinned by an initial theoretical model of mechanisms of action. The measure, the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem), was introduced into the care of residents with dementia for 12 weeks. Qualitative data comprised focus groups and semi-structured interviews with family, care home staff, general practitioners and district nurses; and non-participant observations. Quantitative data comprised IPOS-Dem data. Directed content analysis for qualitative data, and descriptive statistics were used for quantitative data. Findings: Key mechanisms of action were: improved observation and awareness of residents, collaborative assessment, comprehensive ‘picture of the person’, systematic record keeping, improved review and monitoring, care planning and changes to care provision, and facilitated multi-agency communication. Potential benefit included improved symptom management, improved comprehensive care, and increased family empowerment and engagement. IPOS-Dem was found to be acceptable and feasible. It was perceived as quick and easy to use, with proportion of overall missing data decreasing from 2.1% to 1.1% from baseline to final time points. ‘Trust’ in the measure was important; and leadership essential to ensure integration into care processes. Conclusions: In a population with complex care needs, with challenges to assessment and barriers to multi-agency working, a measure introduced into routine care is feasible and acceptable, and supports assessment and management of symptoms and concerns. A refined theoretical model demonstrating the likely mechanisms of action was developed. Further evaluation is required to test its effectiveness. [ABSTRACT FROM AUTHOR]

Background: Emergency department visits towards the end of life by patients with cancer are increasing over time. This is despite evidence of an association with poor patient and caregiver outcomes and most patients preferring home-based care. Aim: To identify socio-demographic and clinical factors associated with end-of-life emergency department visits and determine the relationship between patients' prior emergency department use and risk of multiple (≥2) visits in the last month of life. Design: Population-based cohort study. Setting/participants: All adults who died from cancer, in England, between 1 April 2011 and 31 March 2012. Our primary outcome was the adjusted odds ratio for multiple emergency department visits in the last month of life, derived using multivariable logistic regression. Results: Among 124,030 cancer decedents (52.9% men; mean age: 74.1 years), 30.7% visited the emergency department once in their last month of life and 5.1% visited multiple times. Patients were more likely to visit multiple times if they were men, younger, Asian or Black, of lower socio-economic status, had greater comorbidity, and lung or head and neck cancer. Patients with ≥4 emergency department visits in the 11 months prior to their last month of life were also more likely to make multiple visits during their last 30 days; this followed a dose-response pattern (p for trend <0.001). Conclusion: Patients with greater comorbidity, lung or head and neck cancer and a higher number of previous emergency department visits are more likely to visit the emergency department multiple times in the last month of life. Previously reported socio-demographic factors (men, younger age, Black, low socio-economic status) are also confirmed for the first time in a UK population. [ABSTRACT FROM AUTHOR]

Background: Strategies in many countries have sought to improve palliative care and reduce hospital deaths for non-cancer patients, but their effects are not evaluated. We aimed to determine the trends and factors associated with dying in hospital in two common progressive respiratory diseases, and the impact of a national end of life care (EoLC) strategy to reduce deaths in hospital.Methods: This population-based observational study linked death registration data for people in England dying from chronic obstructive pulmonary disease (COPD) or interstitial pulmonary diseases (IPD). We plotted age- and sex-standardised trends, assessed during the pre-strategy (2001-2004), first strategy phase (2004-2008), and strategy intensification (2009-2014) periods, and identified factors associated with hospital death using multiple adjusted proportion ratios (PRs).Results: Over 14 years, 380,232 people died from COPD (334,520) or IPD (45,712). Deaths from COPD and IPD increased by 0.9% and 9.2% annually, respectively. Death in hospital was most common (67% COPD, 70% IPD). Dying in hospice was rare (0.9% COPD, 2.9% IPD). After a plateau in 2004-2005, hospital deaths fell (PRs 0.92-0.94). Co-morbidities and deprivation independently increased the chances of dying in hospital, with larger effects in IPD (PRs 1.01-1.55) than COPD (PRs 1.01-1.39) and dose-response gradients. The impact of multimorbidity increased over time; hospital deaths did not fall for people with two or more co-morbidities in COPD, nor one or more in IPD. Living in rural areas (PRs 0.94-0.94) or outside London (PRs, 0.89-0.98) reduced the chances of hospital death. In IPD, increased age reduced the likelihood of hospital death (PR 0.81, ≥ 85 versus ≤ 54 years); divergently, in COPD, being aged 65-74 years was associated with increased hospital deaths (PR 1.13, versus ≤ 54 years). The independent effects of sex and marital status differed for COPD versus IPD (PRs 0.89-1.04); in COPD, hospital death was associated with being married.Conclusions: The EoLC strategy appeared to have contributed to tangible reductions in hospital deaths, but did not reach people with multimorbidity and this gap widened over time. Integrating palliative care earlier in the disease trajectory especially in deprived areas and cities, and where multimorbidity is present, should be boosted, taking into account the different demographic factors in COPD and IPD. [ABSTRACT FROM AUTHOR]

Background: Geographical accessibility is important in accessing healthcare services. Measuring it has evolved alongside technological and data analysis advances. High correlations between different methods have been detected, but no comparisons exist in the context of palliative and end of life care (PEoLC) studies. To assess how geographical accessibility can affect PEoLC, selection of an appropriate method to capture it is crucial. We therefore aimed to compare methods of measuring geographical accessibility of decedents to PEoLC-related facilities in South London, an area with well-developed SPC provision. Methods: Individual-level death registration data in 2012 (n = 18,165), from the Office for National Statistics (ONS) were linked to area-level PEoLC-related facilities from various sources. Simple and more complex measures of geographical accessibility were calculated using the residential postcodes of the decedents and postcodes of the nearest hospital, care home and hospice. Distance measures (straight-line, travel network) and travel times along the road network were compared using geographic information system (GIS) mapping and correlation analysis (Spearman rho). Results: Borough-level maps demonstrate similarities in geographical accessibility measures. Strong positive correlation exist between straight-line and travel distances to the nearest hospital (rho = 0.97), care home (rho = 0.94) and hospice (rho = 0.99). Travel times were also highly correlated with distance measures to the nearest hospital (rho range = 0.84-0. 88), care home (rho = 0.88-0.95) and hospice (rho = 0.93-0.95). All correlations were significant at p < 0.001 level. Conclusions: Distance-based and travel-time measures of geographical accessibility to PEoLC-related facilities in South London are similar, suggesting the choice of measure can be based on the ease of calculation. [ABSTRACT FROM AUTHOR]

Background: Monitoring where people die is key to ensure that palliative care is provided in a responsive and integrated way. Aim: To examine trends of place of death and project hospital deaths until 2030 in an ageing country without integrated palliative care. Design: Population-based observational study of mortality with past trends analysis of place of death by gender, age and cause of death. Hospital deaths were projected until 2030, applying three scenarios modelled on 5-year trends (2006–2010). Setting/participants: All adult deaths (⩾18 years old) that occurred in Portuguese territory from 1988 to 2010. Results: There were 2,364,932 deceased adults in Portugal from 1988 to 2010. Annual numbers of deaths increased 11.1%, from 95,154 in 1988 to 105,691, mainly due to more than doubling deaths from people aged 85+ years. Hospital deaths increased by a mean of 0.8% per year, from 44.7% (n = 42,571) in 1988 to 61.7% (n = 65,221) in 2010. This rise was largest for those aged 85+ years (27.8% to 54.0%). Regardless of the scenario considered, and if current trends continue, hospital deaths will increase by more than a quarter until 2030 (minimum 27.7%, maximum 52.1% rise) to at least 83,293 annual hospital deaths, mainly due to the increase in hospital deaths in those aged 85+ years. Conclusion: In one of the most ageing countries in the world, there is a long standing trend towards hospitalised dying, more pronounced among the oldest old. To meet people’s preferences for dying at home, the development of integrated specialist home palliative care teams is needed. [ABSTRACT FROM AUTHOR]

Background: Examination of factors independently associated with participation in mortality followback surveys is rare, even though these surveys are frequently used to evaluate end-of-life care. We aimed to identify factors associated with 1) participation versus non-participation and 2) provision of an active refusal versus a silent refusal; and systematically examine reasons for refusal in a population-based mortality followback survey. Methods: Postal survey about the end-of-life care received by 1516 people who died from cancer (aged ≥18), identified through death registrations in London, England (response rate 39.3%). The informant of death (a relative in 95.3% of cases) was contacted 4–10 months after the patient died. We used multivariate logistic regression to identify factors associated with participation/active refusals and content analysis to examine refusal reasons provided by 205 nonparticipants. Findings: The odds of partaking were higher for patients aged 90+ (AOR 3.48, 95%CI: 1.52–8.00, ref: 20–49yrs) and female informants (AOR 1.70, 95%CI: 1.33–2.16). Odds were lower for hospital deaths (AOR 0.62, 95%CI: 0.46–0.84, ref: home) and proxies other than spouses/partners (AORs 0.28 to 0.57). Proxies of patients born overseas were less likely to provide an active refusal (AOR 0.49; 95% CI: 0.32–0.77). Refusal reasons were often multidimensional, most commonly study-related (36.0%), proxy-related and grief-related (25.1% each). One limitation of this analysis is the large number of nonparticipants who did not provide reasons for refusal (715/920). Conclusions: Our survey better reached proxies of older patients while those dying in hospitals were underrepresented. Proxy characteristics played a role, with higher participation from women and spouses/partners. More information is needed about the care received by underrepresented groups. Study design improvements may guide future questionnaire development and help develop strategies to increase response rates. [ABSTRACT FROM AUTHOR]

An introduction is presented in which the editor discusses various reports within the issue on topics including variation in methods used in Delphi studies in palliative care; research in palliative and end of life care; and palliative care research methods and the science it creates.

Context If access to effective palliative care is to extend beyond cancer patients, an understanding of the comparative prevalence of palliative care problems among cancer and non-cancer patients is necessary. Objectives This systematic review aimed to describe and compare the prevalence of seventeen palliative care-related problems across the four palliative care domains among adults with advanced cancer, acquired immune deficiency syndrome, chronic heart failure, end-stage renal disease (ESRD), chronic obstructive pulmonary disease, multiple sclerosis, motor neuron disease, Parkinson's disease, and dementia. Methods Three databases were searched using three groups of keywords. The results of the extraction of the prevalence figures were summarized. Results The electronic searches yielded 4697 hits after the removal of 1784 duplicates. Of these hits, 143 met the review criteria. The greatest number of studies were found for advanced cancer ( n = 57) and ESRD patients ( n = 47), and 75 of the 143 studies used validated scales. Few data were available for people living with multiple sclerosis ( n = 2) and motor neuron disease ( n = 3). The problems with a prevalence of 50% or more found across most of the nine studied diagnostic groups were: pain, fatigue, anorexia, dyspnea, and worry. Conclusion There are commonalities in the prevalence of problems across cancer and non-cancer patients, highlighting the need for palliative care to be provided irrespective of diagnosis. The methodological heterogeneity across the studies and the lack of non-cancer studies need to be addressed in future research. [ABSTRACT FROM AUTHOR]

Background: Despite the life threatening nature of an HIV diagnosis and the multidimensional problems experienced by this patient population during antiretroviral therapy, the effectiveness of a palliative care approach for HIV positive patients on ART is as yet unknown. Findings: A randomised controlled trial (RCT) was conducted in a sample of 120 HIV positive patients on ART in an urban clinic in Mombasa, Kenya. The intervention was a minimum of seven sessions of multidimensional, person-centred care, given by HIV nurses trained in the palliative care approach over a period of 5 months. Rates of recruitment and refusal, the effectiveness of the randomisation procedure, trial follow-up and attrition and extent of missing data are reported. 120 patients (60 randomised to control arm, 60 randomised to intervention arm) were recruited over 5.5 months, with a refusal rate of 55.7%. During the study period, three participants died from cancer, three withdrew (two moved away and one withdrew due to time constraints). All of these patients were in the intervention arm: details are reported. There were five additional missing monthly interviews in both the control and intervention study arm, bringing the total of missing data to 26 data points (4.3%). Discussion: The quality and implications of these data are discussed extensively and openly, including the effect of full and ethical consent procedures, respondent burden, HIV stigma, accurate randomisation, patient safety and the impact of the intervention. Data on recruitment randomisation, attrition and missing data in clinical trials should be routinely reported, in conjunction with the now established practice of publishing study protocols to enhance research integrity, transparency and quality. Transparency is especially important in cross cultural settings, in which the sources of funding and trial design are often not based in the country of data collection. Findings reported can be used to inform future RCTs in this area. [ABSTRACT FROM AUTHOR]

Background: Health-care costs are growing, with little population-based data about people's priorities for end-of-life care, to guideservice 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', rangingfrom 57% (95% confidence interval: 55%-60%, Italy) to 81% (95% confidence interval: 79%-83%, Spain). Only 2% (95% confidenceinterval: 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 equallyimportant. 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 positiveattitude and preferring death in a hospice/palliative care unit. Those prioritising extending life had the highest home death preferenceof 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 needsto be reoriented with patient education and palliative care becoming mainstream for serious conditions such as cancer. [ABSTRACT FROM AUTHOR]

The article discusses the aspects of breathlessness including its existing mechanisms, diagnosis, and treatment as tackled in a workshop of the European Association of Palliative Care in 2012. It mentions the scope and focus of the condition, which cannot be treated by a single intervention. It cites seceral diagonstic tools used for the condition such as functional magnetic resonance imaging (fMRI) and position emission tomography (PET).

The article presents a study which examines the appraisal of the state of home death. The study reviewed the appraisal and narrative developed from the plenary session during the 2012 meeting of the European Association for Palliative Care (EAPC). The study showed that meeting the preference of patients and creating a home-like environments are the major concerns for hospice and palliative care.

The article presents a study that explores the palliative care needs of patients with end-stage progressive idiopathic fibrotic interstitial lung disease. The study reported uncontrolled symptoms of insomnia, cough and shortness of breath to patients from lung disease centres in London, England. It suggests the need for an education and guidance of palliative care to improve symptom control and a case conference intervention to help address substantial symptom control and psychosocial needs.

Background: There are widespread concerns about communication and support for patients and families, especially when they face clinical uncertainty, a situation most marked in intensive care units (ICUs). Therefore, we aimed to develop and evaluate an interventional tool to improve communication and palliative care, using the ICU as an example of where this is difficult. Methods: Our design was a phase I-II study following the Medical Research Council Guidance for the Development and Evaluation of Complex Interventions and the (Methods of Researching End-of-life Care (MORECare) statement. In two ICUs, with over 1900 admissions annually, phase I modeled a new intervention comprising implementation training and an assessment tool. We conducted a literature review, qualitative interviews, and focus groups with 40 staff and 13 family members. This resulted in the new tool, the Psychosocial Assessment and Communication Evaluation (PACE). Phase II evaluated the feasibility and effects of PACE, using observation, record audit, and surveys of staff and family members. Qualitative data were analyzed using the framework approach. The statistical tests used on quantitative data were t-tests (for normally distributed characteristics), the χ² or Fisher's exact test (for non-normally distributed characteristics) and the Mann-Whitney U-test (for experience assessments) to compare the characteristics and experience for cases with and without PACE recorded. Results: PACE provides individualized assessments of all patients entering the ICU. It is completed within 24 to 48 hours of admission, and covers five aspects (key relationships, social details and needs, patient preferences, communication and information status, and other concerns), followed by recording of an ongoing communication evaluation. Implementation is supported by a training program with specialist palliative care. A post-implementation survey of 95 ICU staff found that 89% rated PACE assessment as very or generally useful. Of 213 family members, 165 (78%) responded to their survey, and two-thirds had PACE completed. Those for whom PACE was completed reported significantly higher satisfaction with symptom control, and the honesty and consistency of information from staff (Mann-Whitney U-test ranged from 616 to 1247, P-values ranged from 0.041 to 0.010) compared with those who did not. Conclusions: PACE is a feasible interventional tool that has the potential to improve communication, information consistency, and family perceptions of symptom control. [ABSTRACT FROM AUTHOR]

The article discusses palliative care in advanced stage of Parkinson disease. Palliative outcome scale was administered to patients. There was a positive correlation between number of symptoms and disease severity. The Palliative outcome scale score was 13.6, and this suggests that moderate palliative care is necessary. It mentions that this patients affected by progressive neurological conditions should be considered for referral to specialist palliative care services.

The need for home palliative care is increasing globally as the overall number of deaths rise and home remains where most people prefer to die and where most spend their last months of life. Research must accompany this growing demand and inform service developments. We highlight key findings by our team at the Cicely Saunders Institute that have informed policy in the UK, Europe, and beyond, influencing clinical practice and training. We also share the lessons learnt in the process of conducting research on aspects related to home palliative care over the last 15 years. We conclude by presenting priorities for future research, expressing our commitment as the WHO Collaborating Centre for Palliative Care, Policy and Rehabilitation to continue helping the development of quality, accessible, and cost-effective home palliative care for the generations to come. [ABSTRACT FROM AUTHOR]

Context: Most patient-reported outcome measurement tools in multiple sclerosis (MS) are geared toward less severely affected patients. Palliative care outcome measures have not been validated in patients with MS. Objectives: To assess the psychometric properties of the Core-Palliative Care Outcome Scale (Core-POS) and POS-MS-Symptoms (POS-MS-S) in patients severely affected by MS. Methods: Secondary analyses were conducted on data from a Phase II trial of palliative care in MS. Patients completed assessments using the following five scales: Core-POS, POS-MS-S, the Multiple Sclerosis Impact Scale, the United Kingdom Neurological Disability Scale, and the Expanded Disability Status Scale. Data quality, scaling assumptions, acceptability, internal consistency, and construct validity of the Core-POS and POS-MS-S were determined using standard psychometric methods. Results: The 46 participants had a mean ±SD age of 52.8 ±10.6 years. The mean Expanded Disability Status Scale score was 7.9 ± 1.2. Missing data were low (0 and 0.2% for the Core-POS and POS-MS-S, respectively), and floor and ceiling effects were absent. Internal consistency was good (Cronbach's alpha for the Core-POS and POS-MS-S were 0.72 [95% CI 0.56–0.84] and 0.81 [95% CI 0.72–0.89], respectively). Construct validity was consistent with a priori hypotheses 17 of 20 times. Conclusion: Psychometric analyses confirm that the Core-POS and POS-MS-S are acceptable, reliable, and valid in patients severely affected by MS. [ABSTRACT FROM AUTHOR]

The article reports on patient experiences with advanced disease suffering from episodic breathlessness. The study involved detailed interviews with chronic heart failure, chronic obstructive pulmonary disease and lung cancer patients. The results of the study suggest that patients with advanced disease experience specific types and patterns of episodic breathlessness.

Abstract: Context: Unlike pain, where the concept of breakthrough and background pain has been widely characterized and defined, breathlessness as a symptom has not yet been fully explored and has been rarely categorized. Objectives: To explore patients'' experiences and descriptions of breathlessness to categorize breathlessness. Methods: Qualitative study using in-depth interviews with patients suffering from four life-limiting and advanced diseases (chronic heart failure, chronic obstructive pulmonary disease, lung cancer, and motor neuron disease). Interviews were tape-recorded, transcribed verbatim, and analyzed using Framework analysis. Results: A total of 51 participants were interviewed (mean ± SD age 68.2 ± 11.6 years; 30 of 51 male; median Karnofsky 60%; mean ± SD breathlessness intensity 3.2 ± 1.7 of 10). Episodic breathlessness and continuous breathlessness were the main categories, with subcategories of triggered and non-triggered episodic breathlessness and continuous breathlessness for short and long periods. Episodic breathlessness triggered by exertion, non-triggered episodic breathlessness, and continuous breathlessness for a long period (“constant variable”) were the most frequent and important categories with a high impact on daily living. Exertional breathlessness occurred in nearly all participants. Participants could differentiate episodic breathlessness (seconds, minutes, or hours) and continuous breathlessness (days, weeks, or months) by time. Episodic breathlessness occurred in isolation or in conjunction with continuous breathlessness. Conclusion: Participants categorize their breathlessness by time and triggers. The categorization needs further verification, similar to that already established in pain, and can be used as a new evidence-based categorization to advance our understanding of this under-researched, yet high impact, symptom to optimize management. [Copyright &y& Elsevier]

Background: Despite being a core business of medicine, end of life care (EoLC) is neglected. It is hampered by research that is difficult to conduct with no common standards. We aimed to develop evidence-based guidance on the best methods for the design and conduct of research on EoLC to further knowledge in the field. Methods: The Methods Of Researching End of life Care (MORECare) project built on the Medical Research Council guidance on the development and evaluation of complex circumstances. We conducted systematic literature reviews, transparent expert consultations (TEC) involving consensus methods of nominal group and online voting, and stakeholder workshops to identify challenges and best practice in EoLC research, including: participation recruitment, ethics, attrition, integration of mixed methods, complex outcomes and economic evaluation. We synthesised all findings to develop a guidance statement on the best methods to research EoLC. Results: We integrated data from three systematic reviews and five TECs with 133 online responses. We recommend research designs extending beyond randomised trials and encompassing mixed methods. Patients and families value participation in research, and consumer or patient collaboration in developing studies can resolve some ethical concerns. It is ethically desirable to offer patients and families the opportunity to participate in research. Outcome measures should be short, responsive to change and ideally used for both clinical practice and research. Attrition should be anticipated in studies and may affirm inclusion of the relevant population, but careful reporting is necessitated using a new classification. Eventual implementation requires consideration at all stages of the project. Conclusions: The MORECare statement provides 36 best practice solutions for research evaluating services and treatments in EoLC to improve study quality and set the standard for future research. The statement may be used alongside existing statements and provides a first step in setting common, much needed standards for evaluative research in EoLC. These are relevant to those undertaking research, trainee researchers, research funders, ethical committees and editors. [ABSTRACT FROM AUTHOR]

Background: Palliative care is increasingly offered earlier in the cancer trajectory but rarely in Idiopathic Parkinson's Disease(IPD), Progressive Supranuclear Palsy(PSP) or Multiple System Atrophy(MSA). There is little longitudinal data of people with late stage disease to understand levels of need. We aimed to determine how symptoms and quality of life of these patients change over time; and what demographic and clinical factors predicted changes. Methods: We recruited 82 patients into a longitudinal study, consenting patients with a diagnosis of IPD, MSA or PSP, stages 3-5 Hoehn and Yahr(H&Y). At baseline and then on up to 3 occasions over one year, we collected self-reported demographic, clinical, symptom, palliative and quality of life data, using Parkinson's specific and generic validated scales, including the Palliative care Outcome Scale (POS). We tested for predictors using multivariable analysis, adjusting for confounders. Findings: Over two thirds of patients had severe disability, over one third being wheelchair-bound/bedridden. Symptoms were highly prevalent in all conditions - mean (SD) of 10.6(4.0) symptoms. More than 50% of the MSA and PSP patients died over the year. Over the year, half of the patients showed either an upward (worsening, 24/60) or fluctuant (8/60) trajectory for POS and symptoms. The strongest predictors of higher levels of symptoms at the end of follow-up were initial scores on POS (AOR 1.30; 95%CI:1.05-1.60) and being male (AOR 5.18; 95% CI 1.17 to 22.92), both were more predictive than initial H&Y scores. Interpretation: The findings point to profound and complex mix of non-motor and motor symptoms in patients with late stage IPD, MSA and PSP. Symptoms are not resolved and half of the patients deteriorate. Palliative problems are predictive of future symptoms, suggesting that an early palliative assessment might help screen for those in need of earlier intervention. [ABSTRACT FROM AUTHOR]

AimTo evaluate the views of clinicians and researchers on their use of outcome measures and which questions are most important in palliative and end-of-life care.MethodsOnline survey of professionals working in clinical care, clinical audit and research in palliative care across Europe and Africa identified through national and international associations and databases. Questions focused on measures used, reasons and which questions were important in two commonly used multidimensional measures, the Palliative care Outcome Scale (POS) and the Support Team Assessment Schedule (STAS).ResultsThe overall completion rate was 59% (392/663). Three outcome measures were commonly used by over one in four respondents for clinical practice and over one in 10 for research: the Karnofsky Performance Scale (KPS), followed by the Edmonton Symptom Assessment Scale (ESAS) and the POS. Measures were used twice as often in clinical practice as in research. The main uses were similar: assessing patients' symptoms/needs (88% and 85% of POS and STAS users, respectively), monitoring changes (62%, 58%), evaluating care (61%, 48%) and assessing family needs (59%, 60%). Respondents rated the most important questions as pain, symptoms, emotional and family aspects. There were no differences in the choice of the most important questions between doctors and nurses or between researchers and clinicians.ConclusionsIn palliative care, outcome measures often used in clinical practice are also often used in research. Questions relating to pain, symptoms, emotional needs and family concerns are consistently considered the most useful and important in palliative patient reported outcome measures (PROMs). [ABSTRACT FROM AUTHOR]

Summary: People with HIV have a high burden of pain and physical, psychological, and social difficulties that can be managed effectively with palliative care. However, most individuals do not have access to this type of care. Palliative care is holistic patient-centred management of life-limiting progressive disorders and is recognised by WHO as an essential element of HIV care, from diagnosis to end of life. Historically, palliative care and HIV care were linked closely, but misconceptions divide the two disciplines today. Palliative care can augment patients'' outcomes and boost adherence to antiretroviral treatments and life expectancy. In much of the world, services providing palliative care are isolated, and most individuals in need have no access to this care. The commitment to provide palliative care for all people with HIV can be fulfilled if clinical workers are trained in this therapeutic approach and if care is delivered at community level, with support for family caregivers. [Copyright &y& Elsevier]

Background: Bereaved relatives are considered to be a vulnerable group and there is debate as to whether it is ethical to engage them in research at a time that can be difficult for them.Aim: We conducted a cross-sectional study using cognitive interviewing with the aim of exploring the acceptability of a mortality follow-back survey among bereaved relatives of recently deceased cancer patients to inform the development of a large-scale survey about end-of-life care.Results: Thirty-three next-of-kin of recently deceased cancer patients were invited to participate in a face-to-face interview, or to complete a postal questionnaire. At the end, they were asked about their views of engaging in the study. Nine bereaved relatives participated in a face-to-face interview and 11 completed the postal questionnaire. Eleven relatives reported it was helpful to take part in the study; of these, six did not consider it distressing, and five stated whilst it had been distressing it had been helpful. Thoughts about bringing back memories, altruism and therapeutic value emerged.Conclusions: We have new evidence that although engaging in follow-back surveys can evoke distress, many participants report it to be a positive experience. We therefore believe that this approach is acceptable when conducted sensitively. [ABSTRACT FROM AUTHOR]

Background: Randomized trials are the gold standard method for evaluating treatments and services in health care. However, they are often difficult to complete in palliative care, and suffer from poor recruitment.Aim: To introduce the randomized fast-track trial and its potential use in palliative care.Method: The randomized fast-track trial is a form of randomized trial with two periods. In the first, the trial runs as a normal randomized trial. In the second period, the standard (control) group also are offered the intervention. The design is adapted from a ‘wait list’ design (sometimes called a deferred entry or delayed intervention trial) but is both less confusing for patients, who are not on waiting lists, and more appropriate to the nature of services offered. The methodology has the advantage of being more acceptable to many patients, clinicians and ethics committees than standard randomized trials, because all patients will eventually be offered the intervention. Yet it has the rigour of a traditional randomized trial. However, care is needed to ensure the correct timing for the first period, before the standard group receive the intervention. The analysis of data in the second period is complex.Conclusion: The fast-track trial has been used successfully in palliative care among patients severely affected by multiple sclerosis, chronic obstructive pulmonary disease and cancer. It is best suited to evaluations of palliative care services among patients who have longer prognoses, for example of several months or more although it has been used in people with prognoses of weeks. [ABSTRACT FROM PUBLISHER]

Aims In this randomised fast-track phase II trial, the authors examined (1) whether the timing of referral to short-term palliative care (PC) affected selected outcomes, and (2) the potential staff-modifying effect of the short-term PC intervention (whether the effects were sustained over time after PC was withdrawn). Methods PC comprised a multiprofessional PC team that provided, on average, three visits, with all care completed by 6 weeks. Recruitment commenced in August 2004 and continued for 1 year. Follow-up was performed for 6 months in both groups. Outcomes were a composite measure of five key symptoms (pain, nausea, vomiting, mouth problems and sleeping difficulty) using the Palliative care Outcome Scalee—MS Symptom Scale, and care giver burden was measured using the Zarit (Care Giver) Burden Interview (ZBI). Results 52 patients severely affected by multiple sclerosis were randomised to receive PC either immediately (fast-track group) or after 12 weeks (control group). Patients had a high level of disability (mean Expanded Disability Status Scale: 7.7; median: 8; SD: 1). Following PC, there was an improvement in Palliative care Outcome Scalee—MS Symptom Scale score and ZBI score. A higher rate of improvement in ZBI score was seen in the fast-track group. After withdrawal of PC, effects were maintained at 12 weeks, but not at 24 weeks. Conclusions Receiving PC earlier has a similar effect on reducing symptoms but greater effects on reducing care giver burden, compared to later referral. In this phase II trial, the authors lacked the power to detect small differences. The effect of PC is maintained for 6 weeks after withdrawal but then appears to wane. Trial Registration Number National Institutes of Health, USA, http://www.Clinicaltrials.gov, NCT00364936. [ABSTRACT FROM AUTHOR]

Abstract: Context: Palliative care is an essential element of HIV care throughout the disease trajectory, but there is a lack of information to guide clinical care at HIV diagnosis. Objectives: This systematic review aimed to identify and appraise the evidence of palliative care-related problems at HIV diagnosis. Methods: The search strategy combined the term “HIV” with seven key words derived from the World Health Organization definition of multidimensional palliative care, in a systematic search of four databases. Abstracts and papers were screened to identify those recording problems within six months of HIV diagnosis in adults. Sample descriptions, aims, methods, and prevalence findings were extracted from these papers into common tables. Results: Of 5443 titles retrieved, 65 met the inclusion criteria and 34 were retained. Papers included 27 original studies and seven secondary analyses of patient’s records, with great heterogeneity in design, sample definition, and outcome measures. Physical and psychological symptoms were highly prevalent (pain 11%–76%, weight loss 8%–89%, fever 32%–89%, diarrhea 6%–54%, anxiety 36%–95%, and depression 18%–47%). At HIV diagnosis, well-being was impaired, suicidal thoughts were frequent, and peace and calmness were reduced. Participants lacked emotional support and feared the reaction of their families. Practical problems included hunger, homelessness, reduced ability to work, and need for childcare. Studies had methodological failings such as the use of unvalidated tools and lack of clarity reporting results. Conclusion: People who have recently been diagnosed with HIV have multidimensional palliative care-related problems. HIV care and support services need to assess and manage problems using integrated palliative care, with referral for complex problems. Patient centeredness must be a principle of HIV clinical research. [Copyright &y& Elsevier]

Despite evidence of negative psychological sequelae and unmet needs, there are few evaluated interventions for informal caregivers in cancer and palliative care. The aim of this article is to debate the strengths and limitations of randomized controlled trials (RCTs) and other designs that can be used to evaluate the effectiveness of these interventions. Psycho-educational interventions are used as example for this debate article, as a number of studies of various designs evaluating this type of intervention have been published. Systematic searching in Medline and the bibliography of a relevant systematic review identified five RCTs, one pre-test/post-test study with a control group and six one-group pre-test/post-test studies of psycho-educational interventions for caregivers. The methodological strengths and weaknesses were assessed. RCTs are seen as the gold standard, but can have important limitations in the context of carer intervention research, including biased recruitment and low generalizability, problems with blinding and attrition. Pre-test/post-test studies with a control group may be more feasible and more generalizable. Their crucial limitation is selection bias. Before–after studies are compromised by additional specific biases and therefore are the weakest of all discussed designs. After analysing the strengths and weaknesses of the mentioned study designs, this paper presents strategies to address the limitations of RCTs evaluating psycho-educational interventions for carers in cancer or palliative care. [ABSTRACT FROM PUBLISHER]

Background: Quality of life (QOL) is a core outcome of palliative care, yet in African settings there is a lack of evidence on patients' levels of QOL. We aimed to describe QOL among patients with incurable, progressive disease receiving palliative care in South Africa and Uganda, to compare QOL in cancer and HIV, to determine how domains of QOL correlate with overall QOL, and compare levels of QOL in this population with those in other studies using the same tool. Methods: A cross-sectional survey was conducted using the Missoula Vitas Quality of Life Index (MVQOLI), a 26-item QOL questionnaire with five subscales (Function, Symptom, Interpersonal, Well being, Transcendent) covering physical, social, psychological and spiritual domains and one global QOL item. One item in each subscale assesses the subjective importance of the domain on a score from 1 (least important) to 5 (most important), used to weight the contribution of the subscale towards the Total QOL score. The tool was translated into 6 languages and administered to consecutively recruited patients at four facilities in South Africa and one in Uganda. Results: 285 patients were recruited, with a mean age of 40.1; 197 (69.1%) were female. Patients' primary diagnoses were HIV (80.7%), cancer (17.9%) and other conditions (1.4%). The mean global QOL score was 2.81 (possible range 0 (worst) to 5 (best)); mean Total score 17.32 (possible range 0 to 30). Patients scored most poorly on Function (mean 0.21), followed by Well being (2.59), Symptoms (5.38), Transcendent (5.50), Interpersonal (9.53) (possible range for subscale scores -30 to 30). Most important to patients were: close relationships (mean 4.13), feeling at peace (4.12), sense of meaning in life (4.10), being active (3.84), physical comfort (2.58). Cancer patients were predominantly recruited at three of the sites; hence comparison with HIV-infected patients was restricted to these sites. HIV+ patients (n = 115) scored significantly worse than cancer patients (n = 50) on Well being (Z = -2.778, p = 0.005), Transcendence (Z = -2.693, p = 0.007) and Total QOL (Z = -2.564, p = 0.01). Global QOL score was most weakly correlated with Total QOL (r = 0.37) and the Transcendent subscale was most highly correlated (r = 0.77) (both p < 0.001). Patients receiving palliative care in South Africa and Uganda exhibited significantly poorer QOL compared to similar populations in the USA. Conclusions: Feeling at peace and having a sense of meaning in life were more important to patients than being active or physical comfort, and spiritual wellbeing correlated most highly with overall QOL. It is therefore vital to identify and meet the psychological and spiritual care needs of patients, as well as to assess and treat pain and other symptoms. Our finding that patients scored most poorly on the Function domain warrants further research. [ABSTRACT FROM AUTHOR]

Although the use of yoga as a complementary therapy is common in palliative care, there is little evidence regarding current practice to inform service provision and research. The aim was to explore and compare yoga classes offered by palliative care services in New Delhi and London. Semi-structured qualitative interviews were conducted with yoga teachers and participants at two services and analysed thematically. Participants were: in Delhi eight family carers, three patients, and two teachers; in London six patients, one teacher, and one assistant. Six key themes are described: content of classes, symptoms and problems, preconceptions and the meaning of yoga, effects of yoga, challenges, and recommendations. This is the first study to examine the experiences of patients and carers practising yoga in palliative care settings. Recommendations include supporting and educating yoga teachers working with this population, and the need for robust trials. [ABSTRACT FROM AUTHOR]

Although the use of yoga as a complementary therapy is common in palliative care, there is little evidence regarding current practice to inform service provision and research. The aim was to explore and compare yoga classes offered by palliative care services in New Delhi and London. Semi-structured qualitative interviews were conducted with yoga teachers and participants at two services and analysed thematically. Participants were: in Delhi eight family carers, three patients, and two teachers; in London six patients, one teacher, and one assistant. Six key themes are described: content of classes, symptoms and problems, preconceptions and the meaning of yoga, effects of yoga, challenges, and recommendations. This is the first study to examine the experiences of patients and carers practising yoga in palliative care settings. Recommendations include supporting and educating yoga teachers working with this population, and the need for robust trials. [ABSTRACT FROM AUTHOR]

Introduction: The epidemiology of progressive cancer and associated mortality in Europe underlines the essential need for high quality palliative and end-of-life care for its citizens. Currently, care of patients at the end-of-life is under-researched and under-funded. This is due to a lack of prioritisation, challenges in defining end-of-life, lack of a common research strategy for Europe that identifies and implements best practice and highest scientific principles, and the need for common use of appropriate well-validated tools to measure and improve the end-of-life cancer experience in Europe. Methods: PRISMA is a pan-European co-ordinating action funded under Framework Programme 7 of the European Commission. With 12 partners in 9 countries, it is delivering a series of 8 Work Packages with the common aim of promoting best practice in the measurement of end-of-life care, setting an agenda and guidance that reflects European cultural diversity, and is informed by both public and clinical priorities. Guidance in the selection, adaptation and use of core tools is informed by experts in public health and clinical research. Discussion: PRISMA is currently producing a series of outputs to be accessible to the wider community of researchers, policy makers, funders and clinicians. We encourage new partnerships to build on the work of PRISMA and to lead high quality work informed by our deliverables. PRISMA, we hope, is redressing the current lack of co-ordination of cancer end-of-life research across Europe, and will catalyse the conduct of evidence-based care that reflects European populations and priorities. [Copyright &y& Elsevier]

Abstract: Objectives: To assess six short-form versions of Zarit Burden Interview (ZBI-12, ZBI-8, ZBI-7, ZBI-6, ZBI-4, and ZBI-1) among three caregiving populations. Study Design and Setting: Secondary analysis of carers'' surveys in advanced cancer (n =105), dementia (n =131), and acquired brain injury (n =215). All completed demographic information and the ZBI-22 were used. Validity was assessed by Spearman correlations and internal consistency using Cronbach''s alpha. Overall discrimination ability was evaluated using the area under the receiver operating characteristic curve (AUC). Results: All short-form versions, except the ZBI-1 in advanced cancer (rho=0.63), displayed good correlations (rho=0.74–0.97) with the ZBI-22. Cronbach''s alphas suggested high internal consistency (range: 0.69–0.89) even for the ZBI-4. Discriminative ability was good for all short forms (AUC range: 0.90–0.99); the best AUC was for ZBI-12 (0.99; 95% confidence interval [CI]: 0.98–0.99) and the second best for ZBI-7 (0.98; 95% CI: 0.96–0.98) and ZBI-6 (0.98; 95% CI: 0.97–0.99). Conclusions: All six short-form ZBI have very good validity, internal consistency, and discriminative ability. ZBI-12 is endorsed as the best short-form version; ZBI-7 and ZBI-6 show almost equal properties and are suitable when a fewer-question version is needed. ZBI-4 and ZBI-1 are suitable for screening, but ZBI-1 may be less valid in cancer. [Copyright &y& Elsevier]

Abstract: Context: There is a trend toward extending palliative care to nonmalignant diseases. There is no evidence that chronic obstructive pulmonary disease (COPD) requires its own model. Objectives: The aim of this study was to investigate how the experience of breathlessness in COPD influences patients'' attitudes toward the end of life and their quality of life. Methods: Eighteen patients were purposively sampled. Data were collected through in-depth interviews and participant observation during outpatient consultations. Narrative methods were used to analyze the data. Results: Treatment-seeking in COPD deviated from prototypical trajectories. Contact with health care was postponed to crisis point. Treatment did not follow diagnosis because of how the diagnosis was given. Help was sought when the symptom had acquired meaning in a person''s life. The future did not feature in the interviews. Conclusion: Good communication practices are fundamental in the care for COPD patients. Particularly, diagnosis and prognosis need to be rethought in a model to suit the condition of COPD. [Copyright &y& Elsevier]

Abstract: Context: Palliative care is being advocated for noncancer patients but needs evidence of effectiveness and cost-effectiveness. Objective: We evaluated the cost-effectiveness of a new palliative care service for people with multiple sclerosis (MS). Methods: We used a randomized fast-track Phase II controlled trial. Patients in South East London who were severely affected by MS were referred by clinicians to the trial. After baseline interview, patients were randomly allocated to either a multiprofessional palliative care team (PCT) immediately (fast track) or the control care group who continued best usual care for three months and then were offered the PCT. Data were collected at baseline, 6, 12, 18, and 26 weeks on use of services, patient symptoms, other outcomes, and caregiver burden. Results: Fifty-two patients were randomized: 25 fast track and 21 control patients completed the trial. There was a high level of disability, and mean Expanded Disability Status Scale score was 7.7 (median 8, standard deviation 1.0). At 12 weeks, caregiver burden was 4.47 points lower (95% confidence interval [CI]: 1.05–7.89) in the fast track compared to the control group. Mean service costs, including inpatient care and informal care, over the 0–12-week follow-up were £1,789 lower for the fast-track group (bootstrapped 95% CI: −£5,224 to £1,902). There was a trend toward lower community costs in the fast-track group and no differences in costs to informal caregivers. Conclusions: The trial suggests that short-term palliative care for people severely affected by MS and their caregivers will be cost-effective and warrants further study. The fast-track trial design could be used to assess this. [Copyright &y& Elsevier]

Objectives To explore the information needs of patients with progressive, life limiting disease and their family caregivers in South Africa and Uganda and to inform clinical practice and policy in this emerging field. Design Semistructured qualitative interview study. Setting Four palliative care services in South Africa and one in Uganda, covering rural, urban, and peri-urban locations. Participants 90 patients and 38 family caregivers enrolled in palliative care services; 28 patients had cancer, 61 had HIV infection (including 6 dual HIV/cancer diagnoses), and 1 had motor neurone disease. Results Five themes emerged from the data. (1) Information sources': a lack of information from general healthcare providers meant that patients and caregivers had to draw on alternative sources of information. (2) Information needs: patients and caregivers reported needing more information in the key areas of the causes and progression of (he disease, its symptoms and treatment, and financial/social support. (3) Impact of unmet needs: poor provision of information had a detrimental effect on patients' and caregivers' ability to cope. (A) Communication: negative experiences of communication with general healthcare staff were reported (misinformation, secrecy, insensitivity). (5) Barriers to effective ¡provision of information: barriers related to symptoms, culture, time constraints in hospital, and paternalism in general health care. Conclusions Lack of information was a major theme for both patients and carers, who had important unanswered questions relating tip living with a progressive incurable disease. Evidence based recommendations for clinicians are presented, including the proactive provision of information tailored to individual patients and families. [ABSTRACT FROM AUTHOR]