European Palliative Care Research Articles

Palliative care provision in long-term care facilities differs across Europe: Results of a cross-sectional study in six European countries (PACE)

Background: While the need for palliative care in long-term care facilities is growing, it is unknown whether palliative care in this setting is sufficiently developed. Aim: To describe and compare in six European countries palliative care provision in long-term care facilities and to assess associations between patient, facility and advance care planning factors and receipt and timing of palliative care. Design: Cross-sectional after-death survey regarding care provided to long-term care residents in Belgium, England, Finland, Italy, the Netherlands and Poland. Generalized estimating equations were used for analyses. Setting/participants: Nurses or care assistants who are most involved in care for the resident. Results: We included 1298 residents in 300 facilities, of whom a majority received palliative care in most countries (England: 72.6%–Belgium: 77.9%), except in Poland (14.0%) and Italy (32.1%). Palliative care typically started within 2 weeks before death and was often provided by the treating physician (England: 75%–the Netherlands: 98.8%). A palliative care specialist was frequently involved in Belgium and Poland (57.1% and 86.7%). Residents with cancer, dementia or a contact person in their record more often received palliative care, and it started earlier for residents with whom the nurse had spoken about treatments or the preferred course of care at the end of life. Conclusion: The late initiation of palliative care (especially when advance care planning is lacking) and palliative care for residents without cancer, dementia or closely involved relatives deserve attention in all countries. Diversity in palliative care organization might be related to different levels of its development.

Spiritual Care in Palliative Care: A Systematic Review of the Recent European Literature.

Many studies on spiritual care in palliative care are performed in the US, leaving other continents unexplored. The objective of this systematic review is to map the recent studies on spiritual care in palliative care in Europe. PubMed, CINAHL, ATLA, PsycINFO, ERIC, IBSS, Web of Science, EMBASE, and other databases were searched. Included were European studies published in a peer-reviewed journal in 2015, 2016, or 2017. The characteristics of the included studies were analyzed and a narrative synthesis of the extracted data was performed. 53 articles were included. Spiritual care was seen as attention for spirituality, presence, empowerment, and bringing peace. It implied creative, narrative, and ritual work. Though several studies reported positive effects of spiritual care, like the easing of discomfort, the evidence for spiritual care is low. Requirements for implementation of spiritual care in (palliative) care were: Developing spiritual competency, including self-reflection, and visibility of spirituality and spiritual care, which are required from spiritual counselors that they participated in existing organizational structures. This study has provided insight into spiritual care in palliative care in Europe. Future studies are necessary to develop appropriate patient outcomes and to investigate the effects of spiritual care more fully.

Predictors and trajectory of performance status in patients with advanced cancer: A secondary data analysis of the international European Palliative Care Cancer Symptom study

Background: Performance status, a predictor of cancer survival, and ability to maintain independent living deteriorate in advanced disease. Understanding predictors of performance status trajectory could help identify those at risk of functional deterioration, target support for independent living and reduce service costs. The relationship between symptoms, analgesics and performance status is poorly delineated. Aim: The aim of this study is to determine whether demographics, analgesics, disease characteristics, quality-of-life domains and C-reactive protein predict the trajectory of Karnofsky Performance Status (KPS) in patients with advanced cancer. Design: The study design is the secondary data analysis of the international prospective, longitudinal European Palliative Care Cancer Symptom study (ClinicalTrials.gov: NCT01362816). A multivariable regression model was built for KPS area under the curve per day (AUC). Setting and participants: This included adults with advanced, incurable cancer receiving palliative care, without severe cognitive impairment and who were not imminently dying (n = 1739). Results: The mean daily KPS AUC (n = 1052) was 41.1 (standard deviation = 14.1). Opioids (p < 0.001), co-analgesics (p = 0.023), poorer physical functioning (p < 0.001) and appetite loss (p = 0.009) at baseline were explanatory factors for lower KPS AUC. A subgroup analysis of participants with C-reactive protein data (n = 240) showed that only C-reactive protein (p = 0.040) and physical function (p < 0.001) were associated with lower KPS AUC. Conclusion: This study is novel in determining explanatory factors for subsequent functional trajectories in an international dataset and identifying systemic inflammation as a candidate therapeutic target to improve functional performance. The effect of interventions targeting physical function, appetite and inflammation, such as those used for cachexia management, on maintaining functional status in patients with advanced cancer needs to be investigated.

1702P - Associations between hematologic toxicity and health-related quality of life during first-line chemotherapy in advanced non-small-cell lung cancer: A pooled analysis of two randomized trials

Background: Many patients experience toxicity from chemotherapy that can negatively impact their health-related quality of life (HRQoL), but side effects often go undetected by health care personnel. Hematologic toxicity (HT) is the main dose-limiting toxicity of chemotherapy. Our aim was to investigate whether patients who experienced severe HT had more negative changes in HRQoL than those who did not. If so, blood counts could represent a simple and objective method for identifying patients at risk of severely impaired HRQoL who may benefit from more supportive care during the treatment period. Methods: Data from two phase III trials of first-line chemotherapy in advanced non-small-cell lung cancer (NSCLC) were analyzed (n = 873). Blood counts were measured weekly. We categorized patients as having severe (CTCAE grade 3-4) or non-severe (grade 0-2) HT during the first chemotherapy cycle. HRQoL was reported on the EORTC QLQ-C30 and LC13 before and at the end of the cycle. The primary endpoints were changes in global quality of life, fatigue, nausea/vomiting and dyspnea (LC13). Mean differences of 5-10 points was considered to represent a small clinical difference. Results: Of the 766 patients with complete data set, 177 (23%) developed severe HT during the first chemotherapy cycle. Severe neutropenia and thrombocytopenia was observed in 149 (19%) and 67 (9%) patients, respectively, while only three (0.4%) patients had severe anemia. Changes in fatigue and nausea/ vomiting were significantly worse for patients experiencing severe compared to patients with non-severe HT (difference in mean change of 4.9 points; p = 0.01, and 6.4 points; p = 0.01, respectively), but this association was limited to neutropenia, not thrombocytopenia or anemia. There were no significant associations between HT and global quality of life or dyspnea (difference in mean change of 2.1 points; p = 0.28, and 3.3 points; p = 0.053, respectively). Conclusions: Patients developing severe HT had worse changes in two out of four HRQoL endpoints, but the association was not strong enough to use blood counts to identify patients who experience deterioration of HRQoL during chemotherapy. Legal entity responsible for the study: European Palliative Care Research Centre (PRC), Department of Clinical and Molecular Medicine, Faculty of Medicine and Health Sciences, NTNU, Norwegian University of Science and Technology, Trondheim, Norway. Funding: Has not received any funding. Disclosure: All authors have declared no conflicts of interest.

The Palliative Radiotherapy and Inflammation Study (PRAIS) - protocol for a longitudinal observational multicenter study on patients with cancer induced bone pain

BackgroundRadiation therapy (RT) results in pain relief for about 6 of 10 patients with cancer induced bone pain (CIBP) caused by bone metastases. The high number of non-responders, the long median time from RT to pain response and the risk of adverse effects, makes it important to determine predictors of treatment response. Clinical features such as cancer type, performance status and pain intensity, and biomarkers for osteoclast activity are proposed as predictors of response to RT. However, results are inconsistent and there is a need for better predictors of RT response. A similar argument can be stated for the development of cachexia; there are currently no predictors that can identify patients who will develop cachexia later in the cancer disease trajectory. Experimental and preclinical studies show that pain, depression and cachexia are related to inflammation. However, it is not known if inflammatory biomarkers can predict CIBP, depression or development of cachexia.MethodsThis multicenter, multinational longitudinal observational study will include 600 adult patients receiving RT for CIBP. Demographic data, clinical variables, osteoclast and inflammatory biomarkers will be assessed before start of RT, and 3, 8, 16, 24 and 52 weeks after last course of RT. The primary aim of the study is to identify potential predictors for pain relief from RT. Secondary aims are to explore potential predictors for development of cachexia, the longitudinal relationship between pain intensity and depression, and if inflammatory biomarkers are associated with changes in pain intensity, cachexia and depression during one-year follow up.DiscussionThe immediate clinical implication of the PRAIS study is to identify potential predictive factors for a RT response on CIBP, and thereby reduce non-efficacious RT. Patient benefits are fewer hospital visits, reduced risk of adverse effects and more individualized pain treatment. The long-term clinical implication of the PRAIS study is to improve the knowledge about inflammation in relation to CIBP, cachexia and depression and potentially identify associations and mechanisms that can be targeted for treatment.Trial registrationClinicalTrials.gov NCT02107664, date of registration April 8, 2014 (retrospectively registered).Trial sponsorThe European Palliative Care Research Centre (PRC), Department of Clinical and Molecular Medicine, NTNU, Faculty of medicine and Health Sciences, Trondheim, N-7491, Norway.

What Is a Good Death?

What Is a Good Death?

Intensity and treatment of symptoms in 3,030 palliative care patients: A cross-sectional survey of the EAPC Research Network

This study aimed to describe intensity and treatment of symptoms other than pain in European palliative care units. A total of 3,030 patients, including 2,064 that used an opioid, were included from 143 palliative care centers, in 21 European countries. Pain was treated with analgesics corresponding to the WHO pain ladder step I (n = 374), II (n = 497), and III (n = 1,567). Frequencies of symptoms observed as moderate or severe were for generalized weakness (50 percent), fatigue (48 percent), anxiety (28 percent), anorexia (26 percent), constipation (18 percent), focal weakness (18 percent), depression (18 percent), and dyspnoea (15 percent). When comparing WHO-groups, cancer diagnoses, metastasis sites, countries, and genders, we found that some of the symptom intensities and treatments differed significantly between subgroups. A majority of patients used drugs for symptom management. Still, more than one-third of patients assessed to have moderate or severe constipation did not receive any treatment. The corresponding numbers for depression, confusion, nausea, vomiting, or anxiety were approaching 40 percent and for poor sleep about 50 percent. Prescription practice of antiemetics, laxatives, and psychotropic drugs varied widely between countries both in terms of preparation and percent of patients receiving a specific treatment. This survey shows that clinically relevant symptoms are frequent and that one-third to half of the patients with a symptom observed as moderate or severe do not receive any treatment aimed to reduce the symptom intensity. Several symptoms and treatments differed between WHO-groups, cancer diagnoses, metastasis locations, countries, and genders. Prescription practice varied between countries both in terms of medication administered and percent of patients receiving specific treatment.

Patients with advanced cancer and depression report a significantly higher symptom burden than non-depressed patients.

Clinical observations indicate that patients with advanced cancer and depression report higher symptom burden than nondepressed patients. This is rarely examined empirically. Study aim was to investigate the association between self-reported depression disorder (DD) and symptoms in patients with advanced cancer controlled for prognostic factors. The sample included 935 patients, mean age 62, 52% males, from an international multicentre observational study (European Palliative Care Research Collaborative - Computerised Symptom Assessment and Classification of Pain, Depression and Physical Function). DD was assessed by the Patient Health Questionnaire-9 and scored with Diagnostic and Statistical Manual of Mental Disorder-5 algorithm for major depressive disorder, excluding somatic symptoms. Symptom burden was assessed by summing scores on somatic Edmonton Symptom Assessment Scale (ESAS) symptoms, excluding depression, anxiety, and well-being. Item-by-item scores and symptom burden of those with and without DD were compared using nonparametric Mann-Whitney U tests. The relative importance of sociodemographic, medical, and prognostic factors and DD in predicting symptom burden was assessed by hierarchical, multiple regression analyses. Patients with DD reported significantly higher scores on ESAS items and a twofold higher symptom burden compared with those without. Factors associated with higher symptom burden were as follows. Diagnosis: lung (β = 0.15, p < 0.001) or breast cancer (β = 0.08, p < 0.05); poorer prognosis: high C-reactive protein (β = 0.08, p < 0.05), lower Karnofsky Performance Status (β = -0.14, p < 0.001), and greater weight loss (β = -0.15, p < 0.001); taking opioids (β = 0.11, p < 0.01); and having DD (β = 0.23, p < 0.001). The full model explained 18% of the variance in symptom burden. DD explained 4.4% over and above that explained by all the other variables. Depression in patients with advanced cancer is associated with higher symptom burden. These results encourage improved routines for identifying and treating those suffering from depression.

Changes in medication use in a cohort of patients with advanced cancer: The international multicentre prospective European Palliative Care Cancer Symptom study

Background: Information on medication use in the last months of life is limited. Aim: To describe which medications are prescribed and deprescribed in advanced cancer patients receiving palliative care in relation to time before death and to explore associations with demographic variables. Design: Prospective study, using case report forms for monthly data collection. Medication included cancer treatment and 19 therapeutic groups, grouped into four categories for: (1) cancer therapy, (2) specific cancer-related symptom relief, (3) other symptom relief and (4) long-term prevention. Data were analysed retrospectively using death as the index date. We compared medication use at 5, 4, 3, 2 and 1 month(s) before death by constructing five cross-sectional subsamples with medication use during that month. Paired analyses were done on a subsample of patients with at least two assessments before death. Setting/participants: We studied the medication use of 720 patients (mean age 67, 56% male) in 30 cancer centres representing 12 countries. Results: From 5 to 1 month(s) before death, cancer therapy decreased (55%–24%), most medications for symptom relief increased, for example, opioids (62%–81%) and sedatives (35%–46%), but medication for long-term prevention decreased (38%–27%). The prevalence of chemotherapy was 15.5% in the last month of life, with 9% of new courses started in the last 2 months. With higher age, chemotherapy and opioid use decreased. Conclusion: Medications for symptom relief increased in almost all medication groups. Deprescribing was found in heart medication/anti-hypertensives and cancer therapy, although use of the latter remained relatively high.

Depression—A Major Contributor to Poor Quality of Life in Patients With Advanced Cancer

ContextQuality of life (QoL) and depression are important patient-reported outcomes in cancer care. However, the relative importance of depression severity in predicting QoL remains unclear because of few methodologically sound studies. ObjectivesTo examine whether depression contributes to impairment of QoL irrespective of prognostic factors and symptom burden. MethodsA total of 563 patients were included from the European Palliative Care Research Collaborative–Computerized Symptom Assessment Study, an international, multi-center, cross-sectional study. The relative importance of prognostic factors (systemic inflammation [modified Glasgow Prognostic Score—mGPS]), co-morbidities and physical performance (Karnofsky Performance Status), symptom burden (loss of appetite, breathlessness, nausea [Edmonton Symptom Assessment Scale], and pain [Brief Pain Inventory]), and depression severity (Patient Health Questionnaire 9) in predicting Global Health/QoL (European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire [EORTC-QLQ-C30]) were assessed using hierarchical multiple regression models. ResultsFifty-five percent were women, median age was 64 years, 87% had metastatic disease, median Karnofsky Performance Status was 70, and mean global QoL was 50.5 (SD = 23.3). Worse QoL was associated with increased systemic inflammation (mGPS = 1 β = −0.12, P = 0.003; mGPS = 2 β = −0.09, P = 0.023), lower physical performance (β = 0.17, P < 0.001), reduced appetite (β = −0.15, P < 0.001), breathlessness (β = −0.11, P = 0.004), pain (β = −0.14, P = 0.002), and higher depression severity (β = −0.27, P < 0.001). The full model accounted for 29% of the observed variance in QoL scores. The strongest predictor was depression severity, accounting for 5.8% of the variance. ConclusionDepression severity was the strongest single predictor of poorer QoL in this sample of patients with advanced cancer, after accounting for a wide range of clinically relevant variables. Future studies should investigate the contribution of psychosocial variables on QoL. Our findings emphasize the importance of managing depression to achieve the best possible QoL for these patients.

The Palliative Care Challenge: Analysis of Barriers and Opportunities to Integrate Palliative Care in Europe in the View of National Associations.

Palliative care (PC) development is diverse and lacks an effective integration into European healthcare systems. This article investigates levels of integrated PC in European countries. A qualitative survey was undertaken for the 2013 EAPC Atlas of PC in Europe with boards of national associations, eliciting opinions on opportunities for, and barriers to, PC development. Barriers and opportunities directly related to PC integration were identified and analyzed thematically according (1) to the dimensions of the World Health Organization (WHO) public health model and (2) by the degree of service provision in each country. A frequency analysis of dimensions and level of provision was also conducted. In total, 48/53 (91%) European countries responded to the survey. A total of 43 barriers and 65 opportunities were identified as being related to PC integration. Main barriers were (1) lack of basic PC training, with a particular emphasis on the absence of teaching at the undergraduate level; (2) lack of official certification for professionals; (3) lack of coordination and continuity of care for users and providers; (4) lack of PC integration for noncancer patients; (5) absence of PC from countries' regulatory frameworks; and (6) unequal laws or regulations pertaining to PC within countries. Innovations in education and new regulatory frameworks were identified as main opportunities in some European countries, in addition to opportunities around the implementation of PC in home care, nursing home settings, and the earlier integration of PC into patients' continuum of care. With increasing provision of services, more challenges for the integration are detected (p < 0.005). A set of barriers and opportunities to PC integration has been identified across Europe, by national associations, offering a barometer against which to check the challenge of integration across countries.

Person-centred palliative care in five European countries: the experiences of patients and family carers

Introduction: Integrated palliative care (IPC) should be responsive to patients’ palliative care needs. However, knowledge about the best way to provide IPC is scarce. Evidence is mainly based on perspectives of professionals and carers. Therefore, the InSup-C project conducted a qualitative study on the experiences of patients’ and their carers’ with care provision in several IPC initiatives in five European countries. The aim of this study was to examine how IPC initiatives respond to patients’ problems and needs.Methods: IPC initiatives, i.e. cross-sector collaborations between professionals to provide palliative care, were recruited in five European countries (Belgium, Germany, Hungary, The Netherlands and the UK) between June 2014 and August 2015. From these initiatives patients with cancer, COPD and Chronic Heart failure (CHF) with a prognosis less than 12 months and their carers were recruited. Semi-structured interviews were conducted at baseline and after 3 months using uniform interview protocols. Interview protocols focused on patients’ problems and needs, identification of professionals in patients' care networks, quality of relationships with professionals and inter-professional collaboration. Interviews were transcribed verbatim. Transcriptions were coded using an internationally agreed codebook based on a qualitative thematic approach.Results: Hundred and seventy-five patients and 90 family carers were interviewed. Of 157 patients, 10% were from Belgium, 22% were from Germany, 22% were from the United Kingdom, 27% were from Hungary and 20% were from the Netherlands. Regarding diagnostic group, 62% had cancer, 13% had CHF and 25% had COPD. Mean age was 67 years and 55% were female.Of 90 family caregivers, 17% were from Belgium, 11% were from Germany, 14% were from the United Kingdom, 33% were from Hungary and 24% were from the Netherlands. Mean age was 59 years and 68% were female.The following four themes emerged from the data and related to person-centred care:- Compassionate care: Patients and carers valued professionals who saw the person beyond the illness and who were involved with them. This enabled a personal relationship and care that was being tailored to patient’s holistic problems and needs.- Patient-centred information: Patients and carers found it important that professionals were honest in giving information about prognosis and treatment possibilities and were patient in their explanation. This allowed patients and carers to ask questions and give their opinions. Patient-centred information provided trust and support in times of uncertainty.- Availability of caregivers: Patients and carers appreciated professionals who ‘were there’ for them, that they knew who to contact in case of needs and that professionals responded adequately when it was necessary.- Inter-professional collaboration: Patients and carers found it important that professionals transferred information and consulted each other when necessary. This resulted in professionals who were up-to-date about the patient and prevented them from telling their story over and over again. It also gave them a sense of trust when they experienced that professionals in their network looked after them together.When the four themes were available in care provision patients and carers were satisfied about care received. Many examples of person-centred care were reported, resulting in patients and carers who experienced care provision as a safety net of professionals who feel responsible and work together in order to adequately respond to their palliative care needs. In cases where these components were absent or insufficiently present, it sometimes resulted in unmet needs, uncertainty or dissatisfaction. Indeed, examples of professionals who only focused on the illness instead of seeing patients as a person or who did not collaborate properly were also reported. Frequent complaints were based on a lack information transfer in the professional-patient and/or professional-professional relationship. Although not always desirable, instances of patients or family caregivers who actively transferred information between professionals themselves were reported. In some cases, assertiveness of patients or carers concerning their dissatisfaction lead to improved care experiences. Country specific differences were found regarding availability of medicines, the role of hospices and main professionals.Discussion and conclusion: These results provide valuable insight in the aspects that are deemed important by patients and their carers from five European countries in order to realise person-centred integrated palliative care. These will contribute to the improvement of integrated palliative care in Europe and will therefore be interesting for both clinicians and policy makers who are involved in this field.On behalf of InSup-C: EU FP7 funded project on integrated palliative care in Europe

Identification of the predictors of cognitive impairment in patients with cancer in palliative care: a prospective longitudinal analysis

Studies with neuropsychological assessments in patients with cancer are sparse, and the evidence is very limited regarding their status of cognitive function over time. This study aimed at assessing the prevalence and predictors of cognitive impairment in patients with cancer in palliative care. Prospective longitudinal investigation derived from the European Palliative Care Cancer Symptom study (2011-2013) including patients with cancer in palliative care, ≥18years, and with at least one assessment post-inclusion. For cognitive assessment, a 4-item version of the Mini Mental State Examination was applied at inclusion and after 4 to 16weeks. Logistic regression model with multiple imputations was applied. The sample consisted of 1568 patients (50% male, mean age 65.5, 42% with 10-12years schooling, mean Karnofsky Performance Status-KPS 68%). Longitudinal analysis of the patients with complete MMSE at both assessments (n=801) showed that 64.5% were not impaired, 12.5% remained cognitively impaired, 11.4% developed impairment, and 11.6% improved. Those who improved cognitively also reported reduced pain intensity and increased appetite. The predictive model (n=1351) showed that those with low KPS (OR=1.6, 95% CI 1.0-2.5) most often developed cognitive impairment, while patients with breast cancer (OR=0.4, 95% CI 0.2-0.7) had lower odds for impairment. During palliative care, a substantial number of patients remained cognitively impaired or developed cognitive impairment; however, it is noteworthy that improvement was also observed. Physical performance and cancer type may predict cognitive impairment.

A systematic review on the role of vitamins, minerals, proteins, and other supplements for the treatment of cachexia in cancer: a European Palliative Care Research Centre cachexia project

We provide a systematic review to support the European Palliative Care Research Collaboration development of clinical guidelines for cancer patients suffering from cachexia. CENTRAL, MEDLINE, PsycINFO, ClinicalTrials.gov, and a selection of cancer journals have been searched up until 15 April 2016. The systematic literature research yielded 4214 publications with 21 of these included in the final evaluation. Regarding minerals, our search identified only one study examining the use of magnesium with no effect on weight loss. As far as vitamins are concerned, vitamin E in combination with omega‐3 fatty acids displayed an effect on survival in a single study, vitamin D showed improvement of muscle weakness in prostate cancer patients, and vitamin C supplementation led to an improvement of various quality of life aspects in a sample with a variety of cancer diagnoses. For proteins, a combination therapy of β‐hydroxy‐β‐methylbutyrate (HMB), arginine, and glutamine showed an increase in lean body mass after 4 weeks in a study of advanced solid tumour patients, whereas the same combination did not show a benefit on lean body mass in a large sample of advanced lung and other cancer patients after 8 weeks. L‐carnitine led to an increase of body mass index and an increase in overall survival in advanced pancreatic cancer patients. Adverse effects of food supplementation were rare and showed mild intensity. There is not enough solid evidence for the use of minerals, vitamins, proteins, or other supplements in cancer. No serious adverse effects have been reported with dietary supplementation.

Integrated palliative care in Europe: a qualitative systematic literature review of empirically-tested models in cancer and chronic disease.

BackgroundIntegrated Palliative Care (PC) strategies are often implemented following models, namely standardized designs that provide frameworks for the organization of care for people with a progressive life-threatening illness and/or for their (in)formal caregivers. The aim of this qualitative systematic review is to identify empirically-evaluated models of PC in cancer and chronic disease in Europe. Further, develop a generic framework that will consist of the basis for the design of future models for integrated PC in Europe.MethodsCochrane, PubMed, EMBASE, CINAHL, AMED, BNI, Web of Science, NHS Evidence. Five journals and references from included studies were hand-searched. Two reviewers screened the search results. Studies with adult patients with advanced cancer/chronic disease from 1995 to 2013 in Europe, in English, French, German, Dutch, Hungarian or Spanish were included. A narrative synthesis was used.Results14 studies were included, 7 models for chronic disease, 4 for integrated care in oncology, 2 for both cancer and chronic disease and 2 for end-of-life pathways. The results show a strong agreement on the benefits of the involvement of a PC multidisciplinary team: better symptom control, less caregiver burden, improvement in continuity and coordination of care, fewer admissions, cost effectiveness and patients dying in their preferred place.ConclusionBased on our findings, a generic framework for integrated PC in cancer and chronic disease is proposed. This framework fosters integration of PC in the disease trajectory concurrently with treatment and identifies the importance of employing a PC-trained multidisciplinary team with a threefold focus: treatment, consulting and training.

Who experiences higher and increasing breathlessness in advanced cancer? The longitudinal EPCCS Study.

Breathlessness is a major cause of suffering in advanced cancer. We aimed to determine the symptom trajectory in people with advanced cancer and to identify those at increased risk of experiencing higher or increasing breathlessness over time in advanced cancer. This was an analysis of the multinational, prospective, longitudinal European Palliative Care Cancer Symptom (EPCCS) study. We included adults with confirmed incurable cancer enrolled in palliative care, with prospective monthly assessments for up to 6months, withdrawal or death, whichever came first. Symptom severity (0-10 numerical rating scales) was analyzed using multivariate random coefficients regression. A total of 1689 patients (50% women; mean age 65.7 ± [standard deviation; SD] 12.4years) were included. Main diagnoses were digestive (31%), lung (20%), and breast (17%) cancers. During a median follow-up of 62 (interquartile range, 0 to 133) days, 65% were breathless at some point and 36% of all patients reported moderate/severe breathlessness. The group mean (1.6 points; SD, 2.4) was unchanged over time, but the severity varied markedly between patients and over time. Independent predictors for worse breathlessness were COPD, lung cancer, living alone, lung metastases, anxiety, pain, depression, and lower performance status. Predictors of worsening breathlessness over time were low performance status (p = 0.039) and moderate to severe pain (p = 0.012). In the largest longitudinal clinical study to date in advanced cancer alone, breathlessness was frequent and associated with factors including respiratory disease, other concurrent unpleasant symptoms, and impaired performance status. Increase in severity over time was predicted by performance status and pain.

Fifty years on the Visual Analogue Scale (VAS) for pain-intensity is still good for acute pain. But multidimensional assessment is needed for chronic pain

The Dorfman et al. paper is one of several recent publications uestioning the usefulness of pain-intensity as an only measureent in chronic pain. Thus, Jane Ballantyne and Mark Sullivan ate last year (2015) in the New England Journal of Medicine asked hether intensity of chronic pain is thewrongmetric [2] and again his year (2016) in PAIN they state that it is not necessary to reduce ain-intensity in order to treat chronic pain well [3]. Fayers et al. 4] on behalf of the European Palliative Care Research Collaboration ocus on the differences in reports of pain intensity and pain intererence among chronic pain patients and palliative care patients in ain. In 2015 in the journalQuality of Life ResearchCook et al. [5] call or establishing a common metric for self-reported pain by linking cales for pain interference with SF-36 bodily pain subscale.

Palliative care in Europe

A resolution by the Council of Europe in 2008 was a major boost for palliative care. Palliative care should be an integral part of health care policy of each member state of the Council. In Central Eastern Europe palliative care is often a luxury, if available at all.

Nephrologists' perceptions regarding dialysis withdrawal and palliative care in Europe: lessons from a European Renal Best Practice survey.

There is a variation in dialysis withdrawal rates, but reasons for this variation across European countries are largely unknown. We therefore surveyed nephrologists' perceptions of factors concerning dialysis withdrawal and palliative care and explored relationships between these perceptions and reports of whether withdrawal actually occurred in practice. We developed a 33-item electronic survey, disseminated via an email blast to all European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) members. In our data analyses, we distinguished those respondents who reported occurrence from those reporting no dialysis withdrawal in their unit. With multilevel logistic regression, we investigated the association between respondents' characteristics and perceptions and whether they reported occurrence of dialysis withdrawal or not. Five hundred and twenty-eight nephrologists from 45 countries completed the questionnaire; 42% reported occurrence of withdrawal in their unit in the past year, and 56% perceived that stopping life-prolonging treatment in terminally ill patients was allowed. Few respondents reported presence in their unit of protocols on withdrawal decision making (7%) or palliative care (10%) or the common involvement of a geriatrician in withdrawal decisions (10%). The majority stated that palliative care had not been part of their core curriculum (74%) and that they had not recently attended continuous medical education sessions on this topic (73%). Respondents from Eastern and Southern Europe had a 42 and 40% lower probability, respectively, of reporting withdrawal compared with those from North European countries. Working in a public centre [odds ratio (OR), 2.41; 95% confidence interval (CI), 1.36-4.25] and respondents' perception that stopping life-prolonging treatment in terminally ill patients was allowed (OR, 1.96; 95% CI, 1.23-3.12), that withdrawal decisions were commonly shared between doctor and patient (OR, 1.97; 95% CI, 1.26-3.08) and that palliative care was reimbursed (OR, 1.81; 95% CI, 1.16-2.83) increased the odds of reporting occurrence of withdrawal. Reports of dialysis withdrawal occurrence varied between European countries. Occurrence reports were more likely if respondents worked in a public centre, if stopping life-prolonging treatments was perceived as allowed, if withdrawal decisions were considered shared between doctors and patients and if reimbursement of palliative care was believed to be in place. There is room for improvement regarding protocols on withdrawal and palliative care processes and regarding nephrologists' training and education on end-of-life care.

Coverage and development of specialist palliative care services across the World Health Organization European Region (2005–2012): Results from a European Association for Palliative Care Task Force survey of 53 Countries

Background: The evolution of the provision of palliative care specialised services is important for planning and evaluation. Aim: To examine the development between 2005 and 2012 of three specialised palliative care services across the World Health Organization European Region – home care teams, hospital support teams and inpatient palliative care services. Design and setting: Data were extracted and analysed from two editions of the European Association for Palliative Care Atlas of Palliative Care in Europe. Significant development of each type of services was demonstrated by adjusted residual analysis, ratio of services per population and 2012 coverage (relationship between provision of available services and demand services estimated to meet the palliative care needs of a population). For the measurement of palliative care coverage, we used European Association for Palliative Care White Paper recommendations: one home care team per 100,000 inhabitants, one hospital support team per 200,000 inhabitants and one inpatient palliative care service per 200,000 inhabitants. To estimate evolution at the supranational level, mean comparison between years and European sub-regions is presented. Results: Of 53 countries, 46 (87%) provided data. Europe has developed significant home care team, inpatient palliative care service and hospital support team in 2005–2012. The improvement was statistically significant for Western European countries, but not for Central and Eastern countries. Significant development in at least a type of services was in 21 of 46 (46%) countries. The estimations of 2012 coverage for inpatient palliative care service, home care team and hospital support team are 62%, 52% and 31% for Western European and 20%, 14% and 3% for Central and Eastern, respectively. Conclusion: Although there has been a positive development in overall palliative care coverage in Europe between 2005 and 2012, the services available in most countries are still insufficient to meet the palliative care needs of the population.