When and how to discuss about palliative care and advance care planning with cancer patients: A mixed-methods study.

OBJECTIVES: To identify the patients who are most likely to participate in discussions about palliative care (PC) and advance care planning (ACP), and to determine their preferred timing and approach of discussion. METHODS: The study included women aged 18-75 years diagnosed with breast cancer. In the quantitative phase, sociodemographic and clinical characteristics, knowledge, decision-making, and stigmas were evaluated. The qualitative phase included questions about patients' understanding, timing, and method of discussing PC and ACP, which were analyzed by Bardin's content analysis. RESULTS: In Phase 1, a total of 115 participants were included, with 53.04% completing both phases and 46.96% declining further participation. Those who completed both phases exhibited higher rates of marriage and educational attainment, while those who declined Phase 2 had a higher prevalence of advanced-stage cancer and palliative treatment. Completion of both phases was associated with a greater knowledge of reality and increased awareness of PC and ACP. Furthermore, the qualitative analysis revealed 5 convergent themes: timing, demystification, patient empowerment, misconception elimination, and open communication. These themes informed the development of a conceptual model that provides a framework for discussing PC and ACP with patients at different stages of cancer diagnosis and treatment, highlighting appropriate and inappropriate approaches and timing. SIGNIFICANCE OF RESULTS: Early discussion is beneficial, but withholding information or infringing on autonomy should be avoided. The study reveals that married and highly educated individuals tend to be more receptive to these discussions. However, patients with late-stage cancer tend to decline participation. Patients value open communication, demystification of PC, and empowering discussions that eliminate misunderstandings. Efforts should be made to reach patients with limited familiarity, particularly those with late-stage cancer, to increase their receptiveness to enable well-informed decision-making.

Preference and actual place-of-death in advanced cancer: prospective longitudinal study.

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.

Burial or cremation? Factors associated with preferences among patients with cancer in Brazil: a cross-sectional study.

BACKGROUND: People living with life-limiting illnesses and their family caregivers consistently emphasize the importance of preparing for imminent death, with planned funerals being a common aspect of this preparation. Few studies have described the funeral rituals or post-mortem preferences of patients with cancer. OBJECTIVE: To evaluate the percentage of patients with cancer who wish to be cremated and to identify the factors associated with this preference. DESIGN AND SETTING: Cross-sectional study conducted at Barretos Cancer Hospital. METHODS: A total of 220 patients with cancer completed a Sociodemographic and Clinical Questionnaire, the Duke University Religiosity Index, and burial or cremation preferences. Binary Logistic Regression was performed to identify independent variables associated with cremation. RESULTS: Of the 220 patients, 25.0% preferred cremation and 71.4% preferred burial. Talks about death with family or close friends in their daily life (odds ratio, OR = 2.89; P = 0.021), patients that answered "other" (unsure, tends not be true and not true) for religious beliefs are what really lie behind my whole approach to life (OR = 20.34; P = 0.005), and education 9 to 11 years (OR = 3.15; P = 0.019) or ≥ 12 years (OR = 3.18; P = 0.024) were associated with cremation preference. CONCLUSION: Most patients with Cancer in Brazil prefer burial after death. Discussions about death, religious beliefs and involvement, and educational level seem to influence the preference for cremation. A deeper understanding of ritual funeral preferences and their associated factors may guide policies, services, and health teams in promoting the quality of dying and death.

Attitudes and beliefs of argentinian medical oncologists regarding palliative care referral / Actitudes y creencias de los médicos oncólogos argentinos sobre la derivación a cuidados paliativos

Abstract Introduction: Local evidence suggests insufficient access to palliative care (PC) for advanced cancer patients. The objective was to investigate the attitudes and beliefs of Argentinian medical oncologists regarding PC referral of their patients. Methods: All medical oncologists listed in the main national Clinical Oncology Associations (N = 831) were invited to participate in a telephone survey. Results: Fifty nine percent (N = 489) completed the survey. Most reported being informed about the scopes of PC (83%) and having accessible PC service/specialists (71%). However, 53% did not work collaboratively, and 55% exceptionally or never referred their patients. Oncologists who usually referred their patients did so mainly due to uncontrolled pain (67%) or absence of curative treatment (48%). Only 19% supported early-referral criteria. Those who exception ally referred their patients argued that PC was not meaningful/beneficial/a priority (78%) or that they preferred to handle the patient's problems by themselves (55%). End-of-life care (33%) and improvement in quality of life (32%) were stated as primary benefits of PC for cancer patients. Addressing psychological aspects was consid ered the least important item (2%). Having an accessible PC service (P = 0.002) and being well informed about PC (P = 0.008) were associated with frequent referral. Having ≤10 years or >30 years from graduation were associated with exceptional or no referral (P = 0.012 and 0.001, respectively). Discussion: Oncologists report awareness of the potential advantages of PC and have accessible PC services, but rarely refer patients. They mainly use late-referral criteria. Younger and older age are negatively associated with referral. More research is needed to improve the referral rate and timing of cancer patients to PC.

Resumen Introducción: La evidencia local sugiere un acceso insuficiente a los cuidados paliativos (CP) para los pacien tes con cáncer avanzado. El objetivo fue investigar las actitudes y creencias de médicos oncólogos argentinos respecto de la derivación de sus pacientes a CP. Métodos: Todos los médicos oncólogos registrados en las principales Asociaciones Nacionales de Oncología Clínica (N = 831) fueron invitados a participar en una encuesta telefónica. Resultados: El 59% (N = 489) completó la encuesta. La mayoría informó estar informado sobre los alcances de CP (83%) y tener especialistas/servicios de CP acce sibles (71%). Sin embargo, el 53% no trabajaba de forma colaborativa y el 55% excepcionalmente o nunca derivaba a sus pacientes. Los oncólogos que habi tualmente derivan a sus pacientes lo hacen principalmente por dolor no controlado (67%) o ausencia de trata miento curativo (48%). Solo el 19% mencionó criterios de derivación temprana. Aquellos que excepcionalmente derivan a sus pacientes argumentaron que los CP no era significativos, beneficiosos o prioritarios (78%) o que preferían manejar los problemas del paciente por sí mismos (55%). La atención al final de la vida (33 %) y la mejora de la calidad de vida (32 %) se señalaron como los principales beneficios de los CP para los pacientes con cáncer. El abordaje de los aspectos psicológicos fue el ítem menos señalado (2%). Tener un servicio de CP accesible (P= 0,002) y estar bien informado sobre CP (P = 0,008) se asociaron con la derivación frecuente. Tener ≤10 años o >30 años desde la graduación se asoció con una derivación excepcional o nula (P = 0,012 y 0,001, respectivamente). Discusión: Los oncólogos refieren conocer las ventajas potenciales de los CP y tienen servicios de CP accesibles, pero rara vez derivan pacientes. Utilizan principalmente criterios de derivación tardía. Las edades más jóvenes y mayores se asocian negativamente con la derivación. Se necesita más investigación para mejorar la tasa y momento de derivación de los pacientes con cáncer a CP.

Attitudes and beliefs of Argentinian medical oncologists regarding palliative care referral.

INTRODUCTION: Local evidence suggests insufficient access to palliative care (PC) for advanced cancer patients. The objective was to investigate the attitudes and beliefs of Argentinian medical oncologists regarding PC referral of their patients. METHODS: All medical oncologists listed in the main national Clinical Oncology Associations (N = 831) were invited to participate in a telephone survey. RESULTS: Fifty nine percent (N = 489) completed the survey. Most reported being informed about the scopes of PC (83%) and having accessible PC service/specialists (71%). However, 53% did not work collaboratively, and 55% exceptionally or never referred their patients. Oncologists who usually referred their patients did so mainly due to uncontrolled pain (67%) or absence of curative treatment (48%). Only 19% supported early-referral criteria. Those who exceptionally referred their patients argued that PC was not meaningful/beneficial/a priority (78%) or that they preferred to handle the patient's problems by themselves (55%). End-of-life care (33%) and improvement in quality of life (32%) were stated as primary benefits of PC for cancer patients. Addressing psychological aspects was considered the least important item (2%). Having an accessible PC service (P = 0.002) and being well informed about PC (P = 0.008) were associated with frequent referral. Having =10 years or >30 years from graduation were associated with exceptional or no referral (P = 0.012 and 0.001, respectively). DISCUSSION: Oncologists report awareness of the potential advantages of PC and have accessible PC services, but rarely refer patients. They mainly use late-referral criteria. Younger and older age are negatively associated with referral. More research is needed to improve the referral rate and timing of cancer patients to PC.

Introducción: La evidencia local sugiere un acceso insuficiente a los cuidados paliativos (CP) para los pacientes con cáncer avanzado. El objetivo fue investigar las actitudes y creencias de médicos oncólogos argentinos respecto de la derivación de sus pacientes a CP. Métodos: Todos los médicos oncólogos registrados en las principales Asociaciones Nacionales de Oncología Clínica (N = 831) fueron invitados a participar en una encuesta telefónica. Resultados: El 59% (N = 489) completó la encuesta. La mayoría informó estar informado sobre los alcances de CP (83%) y tener especialistas/servicios de CP acce sibles (71%). Sin embargo, el 53% no trabajaba de forma colaborativa y el 55% excepcionalmente o nunca derivaba a sus pacientes. Los oncólogos que habitualmente derivan a sus pacientes lo hacen principalmente por dolor no controlado (67%) o ausencia de tratamiento curativo (48%). Solo el 19% mencionó criterios de derivación temprana. Aquellos que excepcionalmente derivan a sus pacientes argumentaron que los CP no era significativos, beneficiosos o prioritarios (78%) o que preferían manejar los problemas del paciente por sí mismos (55%). La atención al final de la vida (33 %) y la mejora de la calidad de vida (32 %) se señalaron como los principales beneficios de los CP para los pacientes con cáncer. El abordaje de los aspectos psicológicos fue el ítem menos señalado (2%). Tener un servicio de CP accesible (P= 0,002) y estar bien informado sobre CP (P = 0,008) se asociaron con la derivación frecuente. Tener =10 años o >30 años desde la graduación se asoció con una derivación excepcional o nula (P = 0,012 y 0,001, respectivamente). Discusión: Los oncólogos refieren conocer las ventajas potenciales de los CP y tienen servicios de CP accesibles, pero rara vez derivan pacientes. Utilizan principalmente criterios de derivación tardía. Las edades más jóvenes y mayores se asocian negativamente con la derivación. Se necesita más investigación para mejorar la tasa y momento de derivación de los pacientes con cáncer a CP.

How to Advance Palliative Care Research in South America? Findings From a Delphi Study.

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.

Subcutaneous Administration of Medications and Fluids by Nonprofessional Caregivers at Home.

Background: Patients requiring home-based palliative care have advanced complex illnesses with functional limitations and decline. This retrospective study reviewed caregiver administration of subcutaneous (SQ) medications and fluids when symptom control could not be achieved using the oral route. Methods: Medical records from September 1, 2017 to February 28, 2018 were reviewed for 272 consecutive patients who received SQ administration of medications or fluids at a home-based palliative care program. We analyzed the clinical characteristics of patients and caregivers, medications administered, and catheter outcomes. Results: Patients' median age was 74 years, and 163 (60%) were women. The most common cancer diagnoses were stomach 26 (12%), lung 22 (10%), and colorectal 20 (9%). Dementia 24 (44%), cerebrovascular disease 9 (16%), and congestive heart failure 7 (13%) were the most frequent nonmalignant diseases. Poor symptom control 162 (60%) and impaired oral intake 107 (39%) were the most common indications for an SQ route of administration. Nonprofessional caregivers trained by a nurse administered medications to 218 patients (80%). During interventions, the patients received a mean of 4 medications (±2 standard deviation). A total of 903 catheters were inserted, 15/732 (2%) catheters handled by nonprofessional caregivers caused a local infection, compared with 3/171 (1.8%) of catheters handled by nurses. Hydromorphone was the most common opioid used (57%), followed by morphine (35%). The median length of stay in the program was 24 days (interquartile range: 11-60). Conclusions: SQ administration of medications and fluids by nonprofessional caregivers trained by health care professionals is feasible and promising, but additional testing is needed.

Burial or cremation? Factors associated with preferences among patients with cancer in Brazil: a cross-sectional study

ABSTRACT BACKGROUND: People living with life-limiting illnesses and their family caregivers consistently emphasize the importance of preparing for imminent death, with planned funerals being a common aspect of this preparation. Few studies have described the funeral rituals or post-mortem preferences of patients with cancer. OBJECTIVE: To evaluate the percentage of patients with cancer who wish to be cremated and to identify the factors associated with this preference. DESIGN AND SETTING: Cross-sectional study conducted at Barretos Cancer Hospital. METHODS: A total of 220 patients with cancer completed a Sociodemographic and Clinical Questionnaire, the Duke University Religiosity Index, and burial or cremation preferences. Binary Logistic Regression was performed to identify independent variables associated with cremation. RESULTS: Of the 220 patients, 25.0% preferred cremation and 71.4% preferred burial. Talks about death with family or close friends in their daily life (odds ratio, OR = 2.89; P = 0.021), patients that answered "other" (unsure, tends not be true and not true) for religious beliefs are what really lie behind my whole approach to life (OR = 20.34; P = 0.005), and education 9 to 11 years (OR = 3.15; P = 0.019) or ≥ 12 years (OR = 3.18; P = 0.024) were associated with cremation preference. CONCLUSION: Most patients with Cancer in Brazil prefer burial after death. Discussions about death, religious beliefs and involvement, and educational level seem to influence the preference for cremation. A deeper understanding of ritual funeral preferences and their associated factors may guide policies, services, and health teams in promoting the quality of dying and death.

Performance status and survival in cancer patients undergoing palliative care: retrospective study.

OBJECTIVE: Accurate forecasting the life expectancy of patients with cancer is adamantly needed for adequate decision-making in the Palliative Care Services (PCS) context. Nonetheless, physician forecast is often inaccurate, hindering end of life (EOL) decisions. In this study, we determined the prognostic value of two oncology performance status (PS) scales at first referral to PCS. METHODS: Retrospective analysis of 6310 patients consecutively admitted to PCS at the Instituto Nacional de Cancerología (2012-2018). Demographic and PS (as per Karnofsky (KPS) and Eastern Cooperative Oncology Group (ECOG) scales) information was retrieved and the overall survival of patients calculated according to PS. Concordance of each scale was assessed in the overall population and according to age. RESULTS: Overall survival was significantly associated with ECOG and KPS (p<0.05). A total of 2278 (36.1%) and 2296 (36.4%) patients were referred to PCS in their last month of life and most had a poor PS (ECOG 3-4, 59.1%; KPS <50, 54.4%). Both PS scales had high concordance in the overall population (K=0.6189 (KPS); K=0.6058 (ECOG)), but a higher value was observed among the subgroup of patients aged ≥65 (K=0.6339 (KPS); 0.6252 (ECOG)). Concordance was lowest among younger (≤39) patients. CONCLUSIONS: PS as assessed by the most widely known tools is strongly associated with overall survival of patients with cancer attending PCS. No large differences were observed among the scales, though results slightly favour the use of KPS. Early referral to PCS and accurate survival prediction can aid in relevant decision-making for patients approaching EOL.

HAprog: A New Prognostic Application to Assist Oncologists in Routine Care.

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.

First-line methadone for cancer pain: titration time analysis.

BACKGROUND: Methadone is a low-cost, strong opioid that is increasingly used as a first-line treatment for pain in palliative care (PC). Its long and unpredictable half-life and slow elimination phase can make titration challenging. Evidence for titration modalities is scarce. OBJECTIVE: To describe the titration phase of the treatment with low-dose first-line methadone and the use of methadone for breakthrough pain. METHODS: Prospective study with strong opioid-naïve patients with moderate to severe cancer pain followed at a tertiary PC unit in Argentina. Starting methadone dose was 2.5-5 mg/day every 8, 12, or 24 h. Titration allowed daily dose increases from day 1, and prescription of oral methadone 2.5 mg every 2 h with a maximum of 3 rescue doses/day for breakthrough pain. Pain control, methadone stabilization dose, and adverse effects, among other variables, were daily assessed over the first 7 days (T0-T7). RESULTS: Sixty-two patients were included. Initial median (IQR) methadone dose was 5 (2.5) mg/day. Pain intensity decreased from a median (IQR) of 8 (2.3) at T0 to 4 (2.3) at T1 and remained ≤ 4 until T7 (all p < 0.0001 compared to T0). Similar results were obtained through the categorical and tolerability scales for pain. Fifty patients (81%) reached pain control, 66% in the first 48 h. Methadone daily doses at T2 and T7 were higher than that at T0: 7.5 (3) and 6.7 (5.5) versus 5 (2.5), respectively (all p < 0.05). The opioid escalation index at T7 was 1.7%. The median (IQR) number of rescues, stabilization dose, and time for stabilization was 0 (1), 5(4.5) mg, and 3(2) days, respectively. Two patients were discontinued due to delirium. All other side effects were mild. CONCLUSIONS: First-line, low-dose methadone using rescue methadone resulted in a pronounced and rapid decrease in pain, with minimal need for titration and for breakthrough doses, and no evidence of accumulation or sedation by the end of the week.

The Impact of International Research Collaborations on the Citation Metrics and the Scientific Potential of South American Palliative Care Research: Bibliometric Analysis.

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.

Bridging the Gap Among Clinical Practice Guidelines for Pain Management in Cancer and Sickle Cell Disease.

Opioids are a critical component of pain relief strategies for the management of patients with cancer and sickle cell disease. The escalation of opioid addiction and overdose in the United States has led to increased scrutiny of opioid prescribing practices. Multiple reports have revealed that regulatory and coverage policies, intended to curb inappropriate opioid use, have created significant barriers for many patients. The Centers for Disease Control and Prevention, National Comprehensive Cancer Network, and ASCO each publish clinical practice guidelines for the management of chronic pain. A recent JAMA Oncology article highlighted perceived variability in recommendations among these guidelines. In response, leadership from guideline organizations, government representatives, and authors of the original article met to discuss challenges and solutions. The meeting featured remarks by the Commissioner of Food and Drugs, presentations on each clinical practice guideline, an overview of the pain management needs of patients with sickle cell disease, an overview of perceived differences among guidelines, and a discussion of differences and commonalities among the guidelines. The meeting revealed that although each guideline varies in the intended patient population, target audience, and methodology, there is no disagreement among recommendations when applied to the appropriate patient and clinical situation. It was determined that clarification and education are needed regarding the intent, patient population, and scope of each clinical practice guideline, rather than harmonization of guideline recommendations. Clinical practice guidelines can serve as a resource for policymakers and payers to inform policy and coverage determinations.

Changes in the Care Setting of First Consults to Palliative and Supportive Care Over a Seven-Year Period.

CONTEXT: Optimal benefits from palliative care (PC) are achieved when first consults (PC1) occur early, in the outpatient setting. Late PC1, like those in the intensive care unit (ICU), limit these benefits. OBJECTIVES: The objective of this study was to determine the proportion of PC1 over time in the outpatient, ICU, and inpatient non-ICU settings. We also examined patients' baseline characteristics and the timing of PC access (from PC1 to death) by the setting of PC1. METHODS: We retrospectively evaluated consecutive cancer patients' records at our cancer center to ascertain the annual number of PC1 and its distribution across settings (2011-2017). ICU PC1 (n = 309) and a random sample of an equal number of outpatient and inpatient non-ICU PC1 were reviewed to retrieve patients' characteristics and death date. RESULTS: PC1 total annual number increased by 58% from 2011 (n = 2286) to 2017 (n = 3615). We found a significant decrease in the proportion of ICU PC1 (from 2.3% in 2011 to 1% in 2017, P < 0.001). There were no significant changes in the proportion of PC1 at outpatient versus inpatient settings (P = 0.2). Hematologic cancer patients were more likely to have an ICU PC1 (P < 0.001). Median survival (months) was 7.7 (6.3-9.7), 3.4 (2.4-4.5), and 0.1 (0.1-0.1) for outpatient, inpatient, and ICU, respectively (P < 0.01). CONCLUSION: PC1 total annual number has increased, and the proportion of PC1 at ICU, a very late clinical setting, is decreasing. Further efforts are needed to integrate PC in hematologic cancer care.

Development and validation of a prognostic nomogram for ambulatory patients with advanced cancer.

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.

Factors Associated With Attrition in a Multicenter Longitudinal Observational Study of Patients With Advanced Cancer.

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.

Perception of Curability Among Advanced Cancer Patients: An International Collaborative Study.

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.

Palliative Care Needs in an Acute Internal Medicine Ward in Mexico.

BACKGROUND: Palliative care is an evolving but underdeveloped practice in Mexico. OBJECTIVE: The primary end point of this prospective observational study was to identify internal medicine inpatients fulfilling advanced criteria within a second-level hospital. Secondary end points were symptom burden, treatment, resource utilization, and one-year survival. DESIGN AND MEASUREMENTS: The 390-sample size calculation was based on previous studies where 15% of inpatients fulfilled palliative care needs. Consecutive admissions were assessed to identify patients with any of the following: cancer, cardiac, renal, hepatic insufficiency, COPD, AIDS, stroke, or fragility until sample size was completed. After obtaining informed consent, interview to patient, attending physician, and chart review was completed to identify any of the following advanced disease criteria in each patient: (1) Surprise question to attending physician of the possibility of the patient dying in the following year, (2) Palliative Performance Scale (PPS) <50, and (3) Advanced disease specific criteria. Interview also included presence of symptoms, functional capacity, and previous resource utilization. Treatment offered was analyzed only on day of admission. One-year follow-up to assess survival was done through the state death certificates. RESULTS: Out of 390 patients, 131 (34%) had any of the diseases studied. Out of 131 patients, 86 (66%) had at least one of the three inclusion criteria for advanced disease. Out of 86 patients, 70 (81%) advanced disease patients died after one-year follow-up. Comparison between patients with no advanced disease (no criteria) versus advanced disease (at least one criteria) showed a significant difference in mean PPS, nutrition status, survival days, inhospital death, weight loss, dependency on activities of daily living, and previous multiple emergency room visits. Advanced disease patients with no death at one year follow-up had significantly more new admissions to that hospital. CONCLUSIONS: The number of patients requiring palliative care in internal medicine wards may be excessive to the current palliative care structures available.

Bispectral Index monitoring in cancer patients undergoing palliative sedation: a preliminary report.

INTRODUCTION: Continuous palliative sedation (PS) is currently titrated based on clinical observation; however, it is often unclear if patients are still aware of their suffering. The aim of this prospective study is to characterize the level of consciousness in patients undergoing PS using Bispectral Index (BIS) monitoring. PATIENTS AND METHODS: We enrolled consecutive patients with refractory symptoms requiring PS. We documented the level of sedation using Ramsay Sedation Scale (RSS) and BIS at 0, 2, 4, 6, 12, and 24 h during the first day of PS and examined their degree of association. Intravenous midazolam or propofol was titrated according to the sedation level. RESULTS: Twenty patients on PS were recruited and had BIS continuous monitoring. Delirium was the most frequent reason for PS (n = 15, 75%). The median time of sedation was 24.5 h (interquartile range 6-46). The average time to achieve the desired sedation level was 6 h, and dose titration was required in 80% of the cases. At baseline, 14 (70%) patients were considered to be awake according to RSS (i.e., 1-3) and 19 (95%) were awake according to BIS (i.e., >60%). This proportion decreased to 31 and 56% at 4 h, 27% and 53 at 6 h, and 22 and 33% at 24 h. RS and BIS had moderate correlation (rho = -0.58 to -0.65); however, a small proportion of patients were found to be awake by BIS (i.e., ≥60%) despite clinical observation (i.e., RSS 4-6) indicating otherwise. CONCLUSIONS: The BIS is a noninvasive, bedside, real-time continuous monitoring method that may facilitate the objective assessment of level of consciousness and dose titration in patients undergoing PS.

The Brazilian Version of the Edmonton Symptom Assessment System (ESAS) Is a Feasible, Valid and Reliable Instrument for the Measurement of Symptoms in Advanced Cancer Patients.

PURPOSES: To develop and validate a Portuguese version of the Edmonton Symptom Assessment System (ESAS) in Brazilian patients with advanced cancer. METHODS: The ESAS was translated and then back translated into Portuguese in accordance with international guidelines. The final version was approved by an Expert Committee after pilot testing on 24 advanced cancer patients. Subsequently, we evaluated the time to complete the assessment, the number of unanswered items, internal consistency, convergent validity, and known-group validity in a sample of 249 advanced cancer patients who completed the ESAS along with the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30), Hospital Anxiety and Depression Scale (HADS), and Epworth Sleepiness Scale (ESS). A total of 90 clinically stable patients were retested after 4 to 96 hours (test-retest reliability), and 80 patients answered the ESAS after 21 (± 7) days to measure scale responsiveness using an anchor-based method. RESULTS: The ESAS was completed in a mean time of only 2.2 minutes. The internal consistency was good (Cronbach's alpha = 0.861), and the removal of single items did not change the overall alpha value. For convergent validity, Spearman's correlation coefficients between the ESAS symptom scores and the corresponding EORTC QLQ-C30 and ESS symptom scores ranged between 0.520 (95% CI = 0.424-0.605) and 0.814 (95% CI = 0.760-0.856), indicating moderate to strong correlations. Test-retest reliability values were considered adequate, with intraclass correlation coefficients ranging from 0.758 (95% CI = 0.627-0.843) to 0.939 (95% CI = 0.905-0.960). CONCLUSIONS: ESAS is a feasible, valid and reliable multi-symptom assessment instrument for use in Brazil.