Objective burden, caregiver psychological distress, and patient religion and quality of life are associated with high-intensity burden of care among caregivers of advanced cancer patients in a Latino population.

OBJECTIVES: Family caregivers (FCs) of cancer patients experience burden of care. The aims of this study are to describe the caregiving phenomenon among FCs of advanced cancer patients in a Latino community and to identify caregiver and patient characteristics associated with high-intensity subjective caregiver burden. METHODS: In this cross-sectional study, advanced cancer patient-caregiver dyads assessed at a Palliative Care Unit in Santiago, Chile, enrolled in a longitudinal observational study were included. FCs completed questions to describe the caregiving phenomenon and surveys to assess burden of care, psychological distress, and perception of patients' symptoms; patients completed surveys to assess physical distress and quality of life (QOL). We explored associations between high-intensity subjective caregiver burden with caregiver and patient variables. RESULTS: Two hundred seven dyads were analyzed. FCs were on average 50 years old and 75% female. Thirty-two percent of FCs experienced high-intensity subjective burden of care. Eighty two percent of FCs took care of the patient daily and 31% took care of the patient alone. In univariate analysis, high-intensity caregiver burden was associated with caregiver depression (59% vs. 27%; p < 0.001), anxiety (86% vs. 67%; p = 0.003), caring for the patient alone (45% vs. 24%; p = 0.002), perception of patient symptom distress, patient religion, and worse patient QOL (mean [standard deviation] 58 [33] vs. 68 [27]; p = 0.03). In multivariate analysis, FC depression (OR [95% confidence interval] 3.07 [1.43-6.60]; p = 0.004), anxiety (3.02 [1.19-7.71]; p = 0.021), caring for the patient alone (2.69 [1.26-5.77]; p = 0.011), caregiver perception of patient's fatigue (1.26 [1.01-1.58]; p = 0.04), and patient's religion (3.90 [1.21-12.61]; p = 0.02) were independently associated with caregiver burden. SIGNIFICANCE OF RESULTS: FCs of advanced cancer patients in a Latino community frequently experience high-intensity burden of care and are exposed to measures of objective burden. High-intensity burden is associated with both caregiver and patient factors. Policies should aim to make interventions on patient-caregiver dyads to decrease caregiving burden among Latinos.

The central role of provider training in implementing resource-stratified guidelines for palliative care in low-income and middle-income countries: Lessons from the Jamaica Cancer Care and Research Institute in the Caribbean and Universidad Católica in Latin America.

Individuals in low-income and middle-income countries (LMICs) account for approximately two-thirds of cancer deaths worldwide, and the vast majority of these deaths occur without access to essential palliative care (PC). Although resource-stratified guidelines are being developed that take into account the actual resources available within a given country, and several components of PC are available within health care systems, PC will never improve without a trained workforce. The design and implementation of PC provider training programs is the lynchpin for ensuring that all seriously ill patients have access to quality PC services. Building on the Breast Health Global Initiative's resource-stratified recommendations for provider education in PC, the authors report on efforts by the Jamaica Cancer Care and Research Institute in the Caribbean and the Universidad Católica in successfully developing and implementing PC training programs in the Caribbean and Latin America, respectively. Key aspects of this approach include: 1) fostering strategic academic partnerships to bring additional expertise and support to the effort; 2) careful adaptation of the curriculum to the local context and culture; 3) early identification of feasible metrics to facilitate program evaluation and future outcomes research; and 4) designing PC training programs to meet local health system needs.

Global Assessment of Palliative Care Need: Serious Health-Related Suffering Measurement Methodology.

CONTEXT: Inequities and gaps in palliative care access are a serious impediment to health systems especially in low- and middle-income countries and the accurate measurement of need across health conditions is a critical step to understanding and addressing the issue. Serious Health-related Suffering (SHS) is a novel methodology to measure the palliative care need and was originally developed by The Lancet Commission on Global Access to Palliative Care and Pain Relief. In 2015, the first iteration - SHS 1.0 - was estimated at over 61 million people worldwide experiencing at least 6 billion days of SHS annually as a result of life-limiting and life-threatening conditions. OBJECTIVES: In this paper, an updated methodology - SHS 2.0 - is presented building on the work of the Lancet Commission and detailing calculations, data requirements, limitations, and assumptions. METHODS AND RESULTS: The updates to the original methodology focus on measuring the number of people who die with (decedents) or live with (non-decedents) SHS in a given year to assess the number of people in need of palliative care across health conditions and populations. Detail on the methodology for measuring the number of days of SHS that was pioneered by the Lancet Commission, is also shared, as this second measure is essential for determining the health system responses that are necessary to address palliative care need and must be a priority for future methodological work on SHS. CONCLUSIONS: The methodology encompasses opportunities for applying SHS to future policy making assessment of future research priorities particularly in light of the dearth of data from low- and middle-income countries, and sharing of directions for future work to develop SHS 3.0.

The development of an advanced diploma program for palliative care leaders in Chile.

Context: The majority of people with serious health-related suffering in low- and middle-income countries lack access to palliative care (PC). Increased access to PC education is greatly needed. Objectives: This paper describes the process to adapt an advanced PC training course for a Chilean context. Methods: A joint team of intercultural PC educators from the US and Chile conducted a series of key informant interviews and a target audience survey to iteratively design a PC training course in Chile. Results: Eight key informant interviews identified a strong need for formal PC education pathways, confirmed the five central learning domains, and helped to identify potential course sub-topics. A target audience survey of 59 PC providers from across Chile confirmed a strong desire to participate in such a course. Conclusion: Our team of intercultural PC educators adapted an advanced PC course to the unique context of Chilean providers.

Is Acetaminophen Beneficial in Patients With Cancer Pain Who are on Strong Opioids? A Randomized Controlled Trial.

CONTEXT: Pain is common among cancer patients. The evidence recommends using strong opioids in moderate to severe cancer pain. No conclusive evidence supports the effectiveness of adding acetaminophen to patients with cancer pain who are already using this regime. OBJECTIVES: To assess the analgesic efficacy of acetaminophen in hospitalized cancer patients with moderate to severe pain receiving strong opioids. METHODS: In this randomized blinded clinical trial, hospitalized cancer patients with moderate or severe acute pain managed with strong opioids were randomized to acetaminophen or placebo. The primary outcome was pain intensity difference between baseline and 48 hours using the Visual Numeric Rating Scales (VNRS). Secondary outcomes included change in morphine equivalent daily dose (MEDD), and patients' perception of improved pain control. RESULTS: Among 112 randomized patients, 56 patients received placebo, 56 acetaminophen. Mean (standard deviation [SD]) decrease in pain intensity (VNRS) at 48 hours were 2.7 (2.5) and 2.3 (2.3), respectively (95% Confidence Interval (CI) [-0.49; 1.32]; P = 0.37). Mean (SD) change in MEDD was 13.9 (33.0) mg/day and 22.4 (57.7), respectively (95% CI [-9.24; 26.1]; P = 0.35). The proportion of patients perceiving pain control improvement after 48 hours was 82% in the placebo and 80% in the acetaminophen arms (P = 0.81). CONCLUSION: Among patients with cancer pain on strong opioid regime, acetaminophen may not improve pain control, or decrease total opioid use. These results add to the current evidence available suggesting not to use acetaminophen as an adjuvant for advanced cancer patients with moderate to severe cancer pain who are on strong opioids.

Bridging gaps to universal palliative care access in Chile: serious health-related suffering and the cost of expanding the package of care services.

Background: The Lancet Commission on Palliative Care (PC) and Pain Relief quantified the burden of serious health-related suffering (SHS), proposing an Essential Package of PC (EPPC) to narrow the global PC divide. We applied the EPPC framework to analyze PC access in Chile, identify gaps in coverage, and provide recommendations to improve PC access. Methods: Total SHS and population in need of PC was estimated using official 2019 government data. We differentiated between cancer and non-cancer related SHS given guaranteed Chilean PC coverage for cancer. We calculated differences between the Chilean PC package and the Lancet Commission EPPC to estimate the cost of expanding to achieve national coverage of palliative care. Findings: In 2019, nearly 105,000 decedent and non-decedent Chileans experienced SHS with a lower-bound estimate of 12.1 million days and an upper-bound estimate of 42.4 million days of SHS. Each individual experienced between 116 and 520 days of SHS per year. People living with a cancer diagnosis had PC access with financial protection, accounting for almost 42% of patients in need. People with non-cancer diagnoses-about 61 thousand patients-lacked PC coverage. Expanding coverage of the EPPC for all patients in need would cost just above $123 million USD, equivalent to 0.47% of Chilean National Health Expenditure. Interpretation: Achieving universal PC access is urgent and feasible for Chile, classified as a high-income country. Expanding PC services and coverage to the EPPC standard are affordable and critical health system responses to ensuring financial protection for patients with SHS. In Chile, this requires closing large gaps in PC coverage pertaining to patients with non-cancer conditions and treatment of symptoms that go beyond pain. Our research provides an empirical approach for applying the Lancet Commission SHS framework to estimate the cost of achieving national universal PC access anchored in a package of health care services. Funding: This research was partially funded by the Chilean Government through the Fondo Nacional de Ciencia y Tecnología (Fondecyt Regular) grant number 1201721, the U.S. Cancer Pain Relief Committee grant AWD-003806 awarded to the University of Miami and by the University of Miami Institute for Advanced Study of the Americas. We acknowledge NIH/NCI award P30CA008748.

Development and Validation of a Tool to Assess the Structural Quality of Palliative Care Services.

CONTEXT: The current gap in access to palliative care requires the expansion of palliative care services worldwide. There is little information about the structural components required by palliative care services to provide adequate end-of-life care. No specific tools have been developed to assess the structural quality of these services. OBJECTIVE: To develop and validate a tool to assess the structural quality of palliative care services. METHODS: A scoping review of literature was performed to identify structural quality indicators of palliative care services. National experts participated in a two-round Delphi method to reach consensus regarding the importance and measurement feasibility of each proposed indicator. Consensus was reached for each indicator if 60% or more considered them both important and feasible. The selected indicators were tested among Chilean palliative care services to assess instrument psychometric characteristics. RESULTS: Thirty-one indicators were identified. Thirty-five experts participated in a two-round Delphi survey. Twenty-one indicators reached consensus and were included in the structural quality of palliative care services tool (SQPCS-21). This instrument was applied to 201 out of 250 palliative care services in Chile. Achievement for each indicator varied between 8% and 96% (mean 52%). The total SQPCS-21 score varied between 3 and 21 points (mean 11 points). CONCLUSION: The SQPCS-21 tool to assess structural quality of palliative care services, has good content and construct validity and its application provides information about institutions at the individual and aggregated level. This tool can provide guidance to monitor the structural quality of palliative care worldwide.

Furthering Palliative Care Training in Latin America: Development and Assessment of an Advanced Diploma Course in Palliative Care in Chile.

CONTEXT: The vast majority of people with serious health-related suffering in low- and middle-income countries lack access to palliative care (PC). In Latin America, this shortage is critical, and PC education is greatly needed. OBJECTIVES: This study aims to assess the effects of an advanced PC diploma course in Chile through assessment of participants' satisfaction, knowledge, behavior, and self-efficacy. METHODS: We developed and implemented a 12-day, hybrid-setting, advanced PC diploma course for Latin American clinicians and collected and analyzed pre course, immediate post course, and 6-month post course quantitative and qualitative data on satisfaction, knowledge, behaviors, and self-efficacy. RESULTS: Thirteen Latin American doctors participated in this advanced PC diploma course. Overall knowledge and self-efficacy increased post course. One hundred percent of participants described the course as "very high quality" or "high quality," described the course's teaching methods as "very easy to understand" or "easy to understand," and ranked role-play as a "very useful" tool. CONCLUSION: There is a critical shortage of PC in Latin America where PC education is greatly needed. The lessons learned from this pilot advanced PC diploma course will inform further PC educational development in Latin America. The results of our course assessments show that an advanced diploma course can increase participants' PC knowledge, behaviors, and self-efficacy with a goal of leveraging the Train the Trainer model to increase PC educational leadership and enable training at participants' home institutions.

Spiritual Pain Is Associated with Decreased Quality of Life in Advanced Cancer Patients in Palliative Care: An Exploratory Study.

Background: Improving quality of life (QOL) is important in cancer palliative care (PC) patients. "Spiritual pain" (SP) is common in this population, but it is unknown how it affects QOL. Objective: To study the associations between SP and QOL in cancer patients in PC. Design: Cross-sectional. Settings/Subjects: Cancer patients assessed at a PC clinic in Puente Alto, Chile, were enrolled in a longitudinal study to characterize patients' end of life. Inclusion criteria included age ≥18, a primary caregiver, not having delirium, and a Karnofsky performance status (KPS) ≤80. Measurements: After consenting patients completed baseline surveys that included demographics, single-item questions to assess SP (0-10), financial distress, spirituality-related variables and questionnaires to assess QOL (0-100), and physical (Global distress score-physical) and psychological distress (Hospital Anxiety and Depression Scale), baseline data analyses to explore associations between SP and QOL were adjusted for potential confounders. Results: Two hundred and eight patients were enrolled: mean age was 64, 50% were female, and 67% had SP. In univariate analysis, SP was significantly associated with lower QOL (coefficient [95% confidence interval]: -1.88 [-2.93 to -0.84], p < 0.001). Lower QOL was also associated with being younger, lower KPS, higher physical distress, having anxiety or depression, and decreased religiosity and religious coping. In the multivariate analysis, QOL remained independently associated with SP (-1.25 [-2.35; to -0.15], p < 0.026), religious coping (11.74 [1.09 to 22.38], p < 0.031), and physical distress (-0.52 [-0.89 to -0.16], p < 0.005). Conclusions: SP is associated with QOL in cancer patients in PC. SP should be regularly assessed to plan for interventions that could impact QOL. More research is needed.

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.

Is it useful to add acetaminophen to high-potency opioids in cancer-related pain? / ¿Sirve agregar paracetamol a opioides fuertes en pacientes con dolor oncológico?

Pain is one of the most frequent and relevant symptoms in cancer patients. The World Health Organization's analgesic ladder proposes the use of strong opioids associated with adjuvants such as acetaminophen or nonsteroidal anti-inflammatory drugs in step III. However, it is unclear whether adding acetaminophen to an analgesic regimen based on strong opioids has any benefit in cancer patients with moderate to severe pain. To answer this question we searched in Epistemonikos database, which is maintained by screening multiple information sources. We identified two systematic reviews including five randomized trials overall. We extracted data and generated a summary of findings table using the GRADE approach. We concluded that adding acetaminophen to strong opioids might make little or no difference in improving pain management in cancer patients.

El dolor es uno de los síntomas más frecuentes y relevantes en pacientes oncológicos. La estrategia analgésica escalonada de la Organización Mundial de la Salud postula el uso de opioides fuertes asociado a coadyuvantes como el paracetamol o los antiinflamatorios no esteroidales en el peldaño III. Sin embargo, existe la duda si agregar paracetamol a un esquema analgésico basado en opioides fuertes presenta algún beneficio en pacientes oncológicos con dolor moderado a severo. Utilizando la base de datos Epistemonikos, la cual es mantenida mediante búsquedas en múltiples fuentes de información, identificamos dos revisiones sistemáticas que en conjunto incluyen cinco estudios aleatorizados. Extrajimos los datos relevantes y resumimos los resultados utilizando el método GRADE. Concluimos que agregar paracetamol a los opioides fuertes podría hacer poca o nula diferencia en el control del dolor en pacientes oncológicos.

Validation of the Spanish Version of the Quality of Dying and Death Questionnaire (QODD-ESP) in a Home-Based Cancer Palliative Care Program and Development of the QODD-ESP-12.

CONTEXT: Improving quality of death (QOD) is a key goal in palliative care (PC). To our knowledge, no instruments to measure QOD have been validated in Spanish. OBJECTIVES: The goals of this study were to validate the Spanish version of the quality of dying and death (QODD) questionnaire and to develop and validate a shortened version of this instrument by phone interview. METHODS: We enrolled caregivers (CGs) of consecutive deceased cancer patients who participated in a single PC clinic. CGs were contacted by phone between 4 and 12 weeks after patients' death and completed the Spanish QODD (QODD-ESP). A question assessing quality of life during last week of life was included. A 12-item QODD (QODD-ESP-12) was developed. Reliability, convergent validity, and construct validity were estimated for both versions. RESULTS: About 150 (50%) of 302 CGs completed the QODD-ESP. Patient's mean age (SD) was 67 (14); 71 (47%) were females, and 131 (87%) died at home. CGs' mean age (SD) was 51 (13); 128 (85%) were females. Mean QODD-ESP score was 69 (range 35-96). Kaiser-Meyer-Olkin measure of sampling adequacy was 0.322, not supporting the use of factorial analysis to assess the existence of an underlying construct. Mean QODD-ESP-12 score was 69 (range 31-97). Correlation with last week quality of life was 0.306 (P < 0.01). Confirmatory factorial analysis of QODD-ESP-12 showed that data fitted well Downey's four factors; Chi-square test = 6.32 (degrees of freedom = 60), P = 0.394 comparative fit index = 0.988; Tucker-Lewis Index = 0.987, and root mean square error of approximation = 0.016 (95% CI 0-0.052). CONCLUSION: QODD-ESP-12 is a reliable and valid instrument with good psychometric properties and can be used to assess QOD in a Spanish-speaking cancer PC population by phone interview.

Longitudinal temporal and probabilistic prediction of survival in a cohort of patients with advanced cancer.

CONTEXT: Survival prognostication is important during the end of life. The accuracy of clinician prediction of survival (CPS) over time has not been well characterized. OBJECTIVES: The aims of the study were to examine changes in prognostication accuracy during the last 14 days of life in a cohort of patients with advanced cancer admitted to two acute palliative care units and to compare the accuracy between the temporal and probabilistic approaches. METHODS: Physicians and nurses prognosticated survival daily for cancer patients in two hospitals until death/discharge using two prognostic approaches: temporal and probabilistic. We assessed accuracy for each method daily during the last 14 days of life comparing accuracy at Day -14 (baseline) with accuracy at each time point using a test of proportions. RESULTS: A total of 6718 temporal and 6621 probabilistic estimations were provided by physicians and nurses for 311 patients, respectively. Median (interquartile range) survival was 8 days (4-20 days). Temporal CPS had low accuracy (10%-40%) and did not change over time. In contrast, probabilistic CPS was significantly more accurate (P < .05 at each time point) but decreased close to death. CONCLUSION: Probabilistic CPS was consistently more accurate than temporal CPS over the last 14 days of life; however, its accuracy decreased as patients approached death. Our findings suggest that better tools to predict impending death are necessary.

Methylphenidate and/or a nursing telephone intervention for fatigue in patients with advanced cancer: a randomized, placebo-controlled, phase II trial.

PURPOSE: Cancer-related-fatigue (CRF) is common in advanced cancer. The primary objective of the study was to compare the effects of methylphenidate (MP) with those of placebo (PL) on CRF as measured using the Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) fatigue subscale. The effect of a combined intervention including MP plus a nursing telephone intervention (NTI) was also assessed. PATIENTS AND METHODS: Patients with advanced cancer with a fatigue score of ≥ 4 out of 10 on the Edmonton Symptom Assessment Scale (ESAS) were randomly assigned to one of the following four groups: MP+NTI, PL+NTI, MP + control telephone intervention (CTI), and PL+CTI. Methylphenidate dose was 5 mg every 2 hours as needed up to 20 mg per day. The primary end point was the median difference in FACIT-F fatigue at day 15. Secondary outcomes included anxiety, depression, and sleep. RESULTS: One hundred forty-one patients were evaluable. Median FACIT-F fatigue scores improved from baseline to day 15 in all groups: MP+NTI (median score, 4.5; P = .005), PL+NTI (median score, 8.0; P < .001), MP+CTI (median score, 7.0; P = .004), and PL+CTI (median score, 5.0; P = .03). However, there were no significant differences in the median improvement in FACIT-F fatigue between the MP and PL groups (5.5 v 6.0, respectively; P = .69) and among all four groups (P = .16). Fatigue (P < .001), nausea (P = .01), depression (P = .02), anxiety (P = .01), drowsiness (P < .001), appetite (P = .009), sleep (P < .001), and feeling of well-being (P < .001), as measured by the ESAS, significantly improved in patients who received NTI. Grade ≥ 3 adverse events did not differ between MP and PL (40 of 93 patients v 29 of 97 patients, respectively; P = .06). CONCLUSION: MP and NTI alone or combined were not superior to placebo in improving CRF.