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OBJECTIVES: To evaluate the preferred place-of-death (PPoD) among patients with advanced cancer over time, and the concordance between preferred and actual place-of-death. METHODS: Prospective cohort study. A total of 190 patients with advanced cancer and their caregivers (n=190) were interviewed every 3 months, from study enrolment to 12 months (M0, M1, M2, M3, M4). PPoD data were obtained under four different end-of-life scenarios: (1) severe clinical deterioration without further specification; (2) clinical deterioration suffering from severe symptoms; (3) clinical deterioration receiving home-based visits; and (4) clinical deterioration receiving home-based visits and suffering from severe symptoms. RESULTS: Home was the most common PPoD over time among patients in scenarios 1 (n=121, 63.7%; n=77, 68.8%; n=39, 57.4%; n=30, 62.5%; n=23, 60.5%) and 3 (n=147, 77.4%; n=87, 77.7%; n=48, 70.6%; n=36, 75.0%; n=30, 78.9%). PPoD in palliative care unit (PCU) and hospital were most frequent at baseline in scenario 2 (n=79, 41.6%; n=78, 41.1%), followed by hospital over time (n=61, 54.5%; n=45, 66.2%; n=35, 72.9%; n=28, 73.7%). During the curse of illness, 6.3% of patients change their PPoD in at least one of end-of-life scenario. About 49.7%, 30.6% and 19.7% of patients died in PCU, hospital and home, respectively. Living in rural area (OR=4.21), poor health self-perception (OR=4.49) and pain at the last days of life (OR=2.77) were associated with death in PPoD. The overall agreement between last preference and actual place-of-death was 51.0% (k=0.252). CONCLUSION: Home death was not the preferred place for a large number of patients when this option was presented within a clinical context scenario. The PPoD and actual place-of-death were depending on the clinical situation.

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CONTEXT: Progress in palliative care (PC) necessarily involves scientific development. However, research conducted in South America (SA) needs to be improved. OBJECTIVES: To develop a set of recommendations to advance PC research in SA. METHODS: Eighteen international PC experts participated in a Delphi study. In round one, items were developed (open-ended questions); in round two, each expert scored the importance of each item (from 0 to 10); in round three, they selected the 20 most relevant items. Throughout the rounds, the five main priority themes for research in SA were defined. In Round three, consensus was defined as an agreement of ≥75%. RESULTS: 60 potential suggestions for overcoming research barriers in PC were developed in round one. Also in Round one, 88.2% (15 of 17) of the experts agreed to define a priority research agenda. In Round two, the 36 most relevant suggestions were defined and a new one added. Potential research priorities were investigated (open-ended). In Round three, from the 37 items, 10 were considered the most important. Regarding research priorities, symptom control, PC in primary care, public policies, education and prognosis were defined as the most relevant. CONCLUSION: Potential strategies to improve scientific research on PC in SA were defined, including stimulating the formation of collaborative research networks, offering courses and workshops on research, structuring centers with infrastructure resources and trained researchers, and lobbying governmental organizations to convince about the importance of palliative care. In addition, priority research topics were identified in the region.

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CONTEXT: More patients are seeing palliative care (PC) earlier in the disease trajectory. The Barretos Prognostic Nomogram (BPN) was designed to fill the gap of survival prognostication for patients with advanced cancer and months of life expectancy. However, its routine use is limited by the common need for a ruler and calculator. Additionally, the BPN requires blood tests. OBJECTIVES: The aim is to refine the BPN and to create a prognostic application (App) for use on smartphones. METHODS: This is a reanalysis of the two cohorts of advanced cancer patients (development, n=215 and validation, n=276). The variable 'metastasis' was revised (volume-site combinations) and 'KPS' replaced by 'ECOG-PS'. Prognostic variables were selected for multivariable Cox and Log-logistic parametric regression analyses; the most accurate final models were identified by backward variable elimination. Calibration and discrimination properties were evaluated in the validation sample. RESULTS: The 'full version' model is composed of 6 parameters: sex, locoregional disease, sites of metastasis, ECOG-PS, WBC and albumin. In the 'clinical version' model (5 variables), the variable 'antineoplastic treatment' was included and the laboratory variables were excluded. At validation, both models were well calibrated and presented adequate c-Index values (0.778 and 0.739). HAprog is a freely downloadable offline App that is used by clinicians to calculate prognosis in less than 1 minute. CONCLUSION: The new models that integrate HAprog are refined prognostic tools with adequate calibration and discrimination properties. It has potential practical impact for the oncologist dealing with outpatients with advanced cancer during the decision-making process.

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Background: Progress in palliative care (PC) requires scientific advances which could potentially be catalyzed by international research collaboration (IRC). It is currently not known how often IRC occurs with PC investigators in South America. Objectives: To evaluate the percentage of South America journal articles on PC involving IRCs and the impact of these collaborations on the scientific potential the studies and on their citations. Methods: This was a bibliometric analysis of studies published between January 1, 1998, and December 31, 2017. A search of Pubmed, Embase, Lilacs, and Web of Science (WOS) was performed using the terms "palliative care," "hospice care," "hospices" and "terminal care," combined with the name of South America countries. The scientific potential was assessed by analyzing study design, characteristics of the journal and funding. IRCs were further subdivided in internal (within South America countries) and external (with countries outside South America). Findings: Of the 641 articles, 117 (18.2%) involved IRCs (internal: 18, 2.8%; external: 110, 17.2%). Articles with IRCs had higher median two-year citations in WOS (2 vs. 1, p < 0.001), Scopus (3 vs. 1, p < 0.001) and Google Scholar (4.5 vs. 2, p < 0.001) compared to articles without IRC. Moreover, they were more often funded (40.7% vs. 9.7%, p < 0.001), published in Pubmed-indexed (76.1% vs. 41.6%; p < 0.001) and in WOS-indexed (70.1% vs. 29.6%; p < 0.001) journals, and with study designs most often classified as clinical trial (5.1% vs. 1.0%; p = 0.002) and cohort (10.3% vs. 2.9%; p < 0.001) compared to articles without IRC. Conclusions: Studies with international research collaborations, both internal and external to South America, are more frequently cited and have characteristics with greater scientific potential than do studies without international collaborations.

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CONTEXT: Many patients with advanced cancer experience aggressive care during the end of life (EOL). Several studies have evaluated the benefits of palliative care (PC) on the reduction of aggressive measures; however, limited data are available about their benefit in Brazilian patients. OBJECTIVES: To evaluate the impact of PC on the reduction of aggressive measures at the EOL. METHODS: Longitudinal study analyzed retrospectively medical records of patients who died of advanced cancer from 2010 to 2014. Data were obtained on PC referral and five quality-of-care indicators at the EOL; that is, emergency department visits, hospital admission, intensive care unit admission, use of systemic antineoplastic therapy within the last 30 days of life, and place of death in hospital as well as the use of a composite score for aggressiveness of care. RESULTS: Of the 1284 patients, 832 (65%) received some aggressive measures in EOL care. Over the years, there was a reduction in the aggressiveness of care (score = 0: 33.2% vs. 47.1%; P < 0.001). Patients not seen by PC received greater aggressive care compared with patients consulted by PC (score ≥1: 87.4% vs. 52.8%; P < 0.001). Early PC was associated with less chemotherapy (P = 0.001) and fewer emergency department visits (P = 0.004) in the last 30 days of life, when compared with late PC. However, there were no demonstrated benefits to significantly reduce the composite score at EOL care aggressiveness. CONCLUSION: Patients with an advanced cancer consultation by PC staff received less aggressive care at the EOL when compared with patients without PC.

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Predicting survival of advanced cancer patients (ACPs) is a difficult task. We aimed at developing and testing a new prognostic tool in ACPs when they were first referred to palliative care (PC). A total of 497 patients were analyzed in this study (development sample, n = 221; validation sample, n = 276). From 35 initial putative prognostic variables, 14 of them were selected for multivariable Cox regression analyses; the most accurate final model was identified by backward variable elimination. Parameters were built into a nomogram to estimate the probability of patient survival at 30, 90, and 180 days. Calibration and discrimination properties of the Barretos Prognostic Nomogram (BPN) were evaluated in the validation phase of the study. The BPN was composed of 5 parameters: sex, presence of distant metastasis, Karnofsky Performance Status (KPS), white blood cell (WBC) count, and serum albumin concentration. The C-index was 0.71. The values of the area under the curve (AUC) of the receiver operating characteristic (ROC) curve were 0.84, 0.74, and 0.74 at 30, 90, and 180 days, respectively. There were good calibration results according to the Hosmer-Lemeshow test. The median survival times were 313, 129, and 37 days for the BPN scores <25th percentile (<125), 25th to 75th percentile (125-175), and >75th percentile (>175), respectively (P < .001). The BPN is a new prognostic tool with adequate calibration and discrimination properties. It is now available to assist oncologists and palliative care physicians in estimating the survival of adult patients with advanced solid tumors.

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BACKGROUND: Palliative sedation (PS) is an intervention to treat refractory symptoms and to relieve suffering at the end of life. Its prevalence and practice patterns vary widely worldwide. The aim of our study was to evaluate the frequency, clinical indications and outcomes of PS in advanced cancer patients admitted to our tertiary comprehensive cancer center. METHODS: We retrospectively studied the use of PS in advanced cancer patients who died between March 1st, 2012 and December 31st, 2014. PS was defined as the use of continuous infusion of midazolam or neuroleptics for refractory symptoms in the end of life. This study was approved by the Research Ethics Committee of our institution (project number 2481-15). RESULTS: During the study period, 552 cancer patients died at the institution and 374 met the inclusion criteria for this study. Main reason for exclusion was death in the Intensive Care Unit. Among all included patients, 54.2% (n = 203) received PS. Patients who received PS as compared to those not sedated were younger (67.8 vs. 76.4 years-old, p < 0.001) and more likely to have a diagnosis of lung cancer (23% vs. 14%, p = 0.028). The most common indications for sedation were dyspnea (55%) and delirium (19.7%) and the most common drugs used were midazolam (52.7%) or midazolam and a neuroleptic (39.4%). Median initial midazolam infusion rate was 0.75 mg/h (interquartile range - IQR - 0.6-1.5) and final rate was 1.5 mg/h (IQR 0.9-3.0). Patient survival (length of hospital stay from admission to death) of those who had PS was more than the double of those who did not (33.6 days vs 16 days, p < 0.001). The palliative care team was involved in the care of 12% (n = 25) of sedated patients. CONCLUSIONS: PS is a relatively common practice in the end-of-life of cancer patients at our hospital and it is not associated with shortening of hospital stay. Involvement of a dedicated palliative care team is strongly recommended if this procedure is being considered. Further research is needed to identify factors that may affect the frequency and outcomes associated with PS.

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PURPOSE: The purpose of the study is to estimate the proportion of patients who had access to palliative care (PC) and to identify the timing and factors associated with this access. METHODS: A retrospective longitudinal study that included patients who died of advanced cancer between the years of 2010 and 2014 was conducted. The proportion of patients who received PC consultations was compared during those years. Sociodemographic and clinical factors, the timing between first PC consultation and death (early, ≥ 3 months; late, < 3 months), and first PC consultation were assessed. RESULTS: Of the 1284 studied patients, 988 (76.9%) were referred to PC and 839 (65.3%) had a PC consultation. The proportion of patients who received late PC consultation increased between the years 2010 and 2014 (44.2 vs. 60.4%, p = 0.001). Multivariate analysis revealed that younger age (odds ratio (OR) = 0.98, p = 0.016) and gynecologic cancer (OR = 2.17, p = 0.011) were associated with a PC consultation. Upper gastrointestinal tract (GIT) cancer (OR = 2.42, p = 0.001) and hematologic malignancies (OR = 0.37, p = 0.001) were associated with late PC consultations. The median time interval between the first PC consultation and death was 2.66 months: timing differed significantly among cancer subtypes (p = 0.002). CONCLUSION: Most patients received PC consultation before death, and the number of patients with late consultation increased throughout the study. Patients with late referrals could have received PC earlier. The current findings suggest the need to standardize the referral criteria to optimize access to PC.

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BACKGROUND: There are limited data on illness understanding and perception of cure among advanced cancer patients around the world. The aim of the study was to determine the frequency and factors associated with inaccurate perception of curability among advanced cancer patients receiving palliative care across the globe. MATERIALS AND METHODS: Secondary analysis of a study to understand the core concepts in end-of-life care among advanced cancer patients receiving palliative care from 11 countries across the world. Advanced cancer patients were surveyed using a Patient Illness Understanding survey and Control Preference Scale. Descriptive statistics and multicovariate logistic regression analysis were performed. RESULTS: Fifty-five percent (763/1,390) of patients receiving palliative care inaccurately reported that their cancer is curable. The median age was 58, 55% were female, 59% were married or had a partner, 48% were Catholic, and 35% were college educated. Sixty-eight percent perceived that the goal of therapy was "to get rid of their cancer," and 47% perceived themselves as "seriously ill." Multicovariate logistic regression analysis shows that accurate perception of curability was associated with female gender (odds ratio [OR] 0.73, p = .027), higher education (OR 0.37, p < .0001), unemployment status (OR 0.69, p = .02), and being from France (OR 0.26, p < .0001) and South Africa (OR 0.52, p = .034); inaccurate perception of curability was associated with better Karnofsky performance status (OR 1.02 per point, p = .0005), and being from Philippines (OR 15.49, p < .0001), Jordan (OR 8.43, p < .0001), Brazil (OR 2.17, p = .0037), and India (OR 2.47, p = .039). CONCLUSION: Inaccurate perception of curability in advanced cancer patients is 55% and significantly differs by gender, education, performance status, employment status, and country of origin. Further studies are needed to develop strategies to reduce this misperception of curability in advanced cancer patients. IMPLICATIONS FOR PRACTICE: The findings of this study indicate that inaccurate perception of curability among advanced cancer patients is 55%. Inaccurate perception of curability significantly differs by gender, education, performance status, employment status, and country of origin. There is great need to facilitate improved patient-physician communication so as to improve health care outcomes and patient satisfaction.

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CONTEXT: Attrition is common in longitudinal observational studies in palliative care. Few studies have examined predictors of attrition. OBJECTIVES: To identify patient characteristics at enrollment associated with attrition in palliative oncology outpatient setting. METHODS: In this longitudinal observational study, advanced cancer patients enrolled in an outpatient multicenter study were assessed at baseline and two to five weeks later. We compared baseline characteristics between patients who returned for follow-up and those who dropped out. RESULTS: Seven hundred forty-four patients were enrolled from Jordan, Brazil, Chile, Korea, and India. Attrition rate was 33%, with variation among countries (22%-39%; P = 0.023). In univariate analysis, baseline predictors for attrition were cognitive failure (odds ratio [OR] 1.23 per point in Memorial Delirium Assessment Scale; P < 0.01), functional status (OR 1.55 per 10-point decrease in Karnofsky Performance Status; P < 0.01), Edmonton Symptom Assessment Scale [ESAS] physical score (OR 1.03 per point; P < 0.01), ESAS emotional score (OR 1.05 per point; P < 0.01), and shorter duration between cancer diagnosis and palliative care referral in months (OR 0.89 per log; P = 0.028). In multivariate analysis, cognitive failure (OR 1.12 per point; P = 0.007), ESAS physical score (OR 1.18 per point; P = 0.027), functional status (OR 1.35 per 10-point decrease; P < 0.001), and shorter duration from cancer diagnosis (OR 0.86 per log; P = 0.01) remained independent predictors of attrition. CONCLUSION: Advanced cancer patients with cognitive failure, increased physical symptoms, poorer performance status, and shorter duration from cancer diagnosis were more likely to dropout. These results have implications for research design, patient selection, and data interpretation in longitudinal observational studies.

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