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Background: Specialist palliative care is often provided late in the patient's disease trajectory in response to uncontrolled symptoms. Shifting from this reactionary illness-stress paradigm to a proactive health-wellness approach, the ENABLE (Educate, Nurture, Advise, Before Life Ends) telehealth model aims to enhance the coping, stress and symptom management, self-care, and advance care planning skills of patients with advanced cancers and their caregivers. The ENABLE model has been culturally adapted to Singapore (ENABLE-SG) and pilot-tested. A hybrid type 1 effectiveness-implementation design will be used to evaluate the effectiveness of ENABLE-SG while collecting real-world implementation data., Methods: This single-centre, assessor-blind, wait-list (immediately vs. 6 months) randomized controlled trial will recruit 300 adult patients within 60 days of an advanced cancer diagnosis and their family caregivers from the National Cancer Centre of Singapore. ENABLE-SG comprises structured psychoeducational sessions with a telehealth coach, covering essential topics of early palliative care. Participants will be assessed at baseline and every 3 months until patient's death, 12 months (caregivers), or end of study (patients). The primary outcome is patient quality of life 6 months after baseline. Secondary patient-reported outcomes include mood, coping, palliative care concerns, and health status. Secondary caregiver-reported outcomes include caregiver quality of life, mood, coping, and care satisfaction. Mixed-effects regression modelling for repeated measurements will be used. To assess the effectiveness of ENABLE-SG versus usual care, patient and caregiver outcomes at 6 months will be compared. To compare earlier versus delayed ENABLE-SG, patient and caregiver outcomes at 12 months will be compared. Within the hybrid type 1 effectiveness-implementation design, implementation outcomes will be evaluated in both the early and delayed groups. Acceptability, adoption, appropriateness, and feasibility will be assessed using a feedback survey and semi-structured interviews with a purposive sample of patients, caregivers, and healthcare providers. Transcribed interviews will be analysed thematically. Other implementation outcomes of penetration, fidelity, and cost will be assessed using records of study-related processes and summarized using descriptive statistics. A cost-effectiveness analysis will also be conducted., Discussion: This study will assess both effectiveness and implementation of ENABLE-SG. Insights into implementation processes can facilitate model expansion and upscaling., Trial Registration: Registered prospectively on ClinicalTrials.gov, NCT06044441. Registered on 21/09/2023., (© 2024. The Author(s).)

Objective: A Universal Health Coverage goal is to provide access to affordable palliative care to reduce disparities in end-of-life (EOL) outcomes. To assess progress toward this goal in Sri Lanka, our primary aim was to systematically assess differences in patients' physical, psychological, social and spiritual outcomes, and their perceived quality of care by their socioeconomic status (SES)., Methods: As part of the multi-country APPROACH (Asian Patient Perspectives Regarding Oncology Awareness, Care and Health) study, we surveyed 199 patients with a stage IV solid malignant tumor and aged >21 years from the largest government cancer hospital in Sri Lanka. We assessed their physical (physical and functional well-being, symptom burden), psychological (anxiety, depression, emotional well-being), social (social well-being), and spiritual outcomes and perceived quality of care (physician communication, nursing care, and coordination/responsiveness)., Results: Low SES patients reported significantly lower physical and functional well-being, emotional well-being, spiritual well-being including meaning/peace and faith; and significantly higher symptom burden, anxiety and depressive symptoms compared with patients from high SES ( p < 0.05 for all outcomes)., Significance of Results: Results have implications regarding reducing barriers in access to appropriate palliative care and EOL care services to stage IV cancer patients from low SES in Sri Lanka.

Context: To date, little is known about palliative care (PC) awareness and utilization in low- and middle-income countries (LMICs) in Asia., Objectives: This study aimed to investigate PC awareness and its predictors, utilization of PC services, and perceived utilization barriers among advanced cancer patients from select hospitals in Asian LMICs., Methods: This cross-sectional study analyzed data of 759 advanced cancer patients at major hospitals of four LMICs in Asia (i.e., Bangladesh, Philippines, Sri Lanka, and Vietnam). The predictors of PC awareness were investigated using multivariable logistic regression., Results: Overall PC awareness was 30.8% (n = 234). Patients with higher education (OR = 1.0; CI = 1.0,1.1), from upper-middle or high-income households (compared to low-income) (OR = 2.0; CI = 1.2,3.3), awareness of disease severity (OR = 1.5; CI = 1.0,2.2), and higher pain severity (OR = 1.1; CI = 1.0,1.2) had higher odds of PC awareness. Compared to patients who perceived themselves as being very informed about disease trajectory, those who were unsure (OR = 0.5; CI = 0.3,0.8) or uninformed (OR = 0.5; CI = 0.3,0.9) had lower odds of PC awareness. The PC utilization rate was 35.0% (n = 82) among those with PC awareness, and 47.8% (n = 66) among patients recommended PC by a healthcare professional (n = 138). The most cited PC utilization barriers were currently receiving anti-cancer treatment (n = 43; 33.9%), and having insufficient information about PC (n = 41; 32.3%)., Conclusion: The low awareness of PC services in these major hospitals in Asian LMICs highlights that more effort may be required to promote the awareness of PC in this region. The efforts should especially focus on those from disadvantaged groups to reduce the gap in PC awareness., (Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Most studies describe the "average healthcare cost trend" among patients with cancer. We aimed to delineate heterogeneous trajectories of healthcare cost during the last 2 years of life of patients with a metastatic cancer and to assess the associated sociodemographic and clinical characteristics and healthcare use., Patients and Methods: We analyzed a sample of 353 deceased patients from a cohort of 600 with a solid metastatic cancer in Singapore, and we used group-based trajectory modeling to identify trajectories of total healthcare cost during the last 2 years of life., Results: The average cost trend showed that mean monthly healthcare cost increased from SGD $3,997 during the last 2 years of life to SGD $7,516 during the last month of life (USD $1 = SGD $1.35). Group-based trajectory modeling identified 4 distinct trajectories: (1) low and steadily decreasing cost (13%); (2) steeply increasing cost in the last year of life (14%); (3) high and steadily increasing cost (57%); and (4) steeply increasing cost before the last year of life (16%). Compared with the low and steadily decreasing cost trajectory, patients with private health insurance (β [SE], 0.75 [0.37]; P=.04) and a greater preference for life extension (β [SE], -0.14 [0.07]; P=.06) were more likely to follow the high and steadily increasing cost trajectory. Patients in the low and steadily decreasing cost trajectory were most likely to have used palliative care (62%) and to die in a hospice (27%), whereas those in the steeply increasing cost before the last year of life trajectory were least likely to have used palliative care (14%) and most likely to die in a hospital (75%)., Conclusions: The study quantifies healthcare cost and shows the variability in healthcare cost trajectories during the last 2 years of life. Policymakers, clinicians, patients, and families can use this information to better anticipate, budget, and manage healthcare costs.

Background: Prognostic disclosure to patients with advanced cancer facilitates treatment decisions and goals of care discussions. However, the perspectives of patients, families and physicians differ in this regard across different cultures. Non-disclosure of cancer diagnosis or prognosis is commonly observed in family-centric cultures such as India., Aim: To assess the prevalence of and factors associated with cancer patients' awareness of advanced disease status; and its with quality of life and psychological distress., Methods: Patients for this cross-sectional questionnaire-based survey were recruited from oncology and palliative medicine clinics at a tertiary cancer hospital in India from January 2017 to June 2018. Patients aged ≥ 21 years, aware of cancer diagnosis and receiving oncology treatment for Stage IV solid cancer were included in the study after obtaining written informed consent., Results: Two hundred patients were enrolled, of which 146 (73%) were not aware of the stage of their malignancy and 9 (4.5%) believed that their disease was at stage I, II or III. Those who were aware of their advanced cancer stage had more years of education (9.9 years vs 8.1 years, p = .05) and had poorer spiritual wellbeing in the faith domain (adjusted difference -1.6, 95% confidence interval -3.1 to -0.1, p = .03) compared to those who were unaware., Conclusion: It is recommended that future studies may explore prognostic understanding in Indian patients according to their socio-cultural, spiritual and educational background.

Aims: The associations between prognostic awareness, acceptance of illness and psychological outcomes (anxiety, depression and spiritual well-being) remain unclear. This study examined the associations between prognostic awareness and various psychological outcomes and how they can be moderated by patient acceptance of illness (cancer)., Materials and Methods: In total, 1184 patients with stage IV solid cancer were recruited at major public hospitals across four Asian countries (China, India, Sri Lanka, Vietnam). Prognostic awareness and acceptance of illness were assessed through self-reported understanding of treatment intent and acceptance of illness, respectively. Anxiety and depression were assessed using the Hospital Anxiety and Depression Scale, whereas spiritual well-being was measured using the Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being Scale. Multivariate regressions were used to estimate the associations while controlling for patient characteristics., Results: Compared with being unaware of their prognosis (i.e. believing that their cancer is curable), being aware or unsure of their prognosis was associated with higher anxiety and depressive symptoms, and lower spiritual well-being scores. Acceptance of illness moderated these relationships and improved the psychological outcomes., Conclusions: The results suggest that disclosure of prognostic information should be provided in conjunction with psychological interventions that focus on acceptance of illness., (Copyright © 2021 The Royal College of Radiologists. Published by Elsevier Ltd. All rights reserved.)

Background: Many patients with a solid metastatic cancer are treated aggressively during their last month of life. Using data from a large prospective cohort study of patients with an advanced cancer, we aimed to assess the number and predictors of aggressive interventions during last month of life among patients with solid metastatic cancer and its association with bereaved caregivers' outcomes., Methods: We used data of 345 deceased patients from a prospective cohort study of 600 patients. We surveyed patients every 3 months until death for their physical, psychological and functional health, end-of-life care preference and palliative care use. We surveyed their bereaved caregivers 8 weeks after patients' death regarding their preparedness about patient's death, regret about patient's end-of-life care and mood over the last week. Patient data was merged with medical records to assess aggressive interventions received including hospital death and use of anti-cancer treatment, more than 14 days in hospital, more than one hospital admission, more than one emergency room visit and at least one intensive care unit admission, all within the last month of life., Results: 69% of patients received at least one aggressive intervention during last month of life. Patients hospitalized during the last 2-12 months of life, male patients, Buddhist or Taoist, and with breast or respiratory cancer received more aggressive interventions in last month of life. Patients with worse functional health prior to their last month of life received fewer aggressive interventions in last month of life. Bereaved caregivers of patients receiving more aggressive interventions reported feeling less prepared for patients' death., Conclusion: Findings suggest that intervening early in the sub-group of patients with history of hospitalization prior to their last month may reduce number of aggressive interventions during last month of life and ultimately positively influence caregivers' preparedness for death during the bereavement phase., Trial Registration: NCT02850640 ., (© 2022. The Author(s).)

Background: Reducing suffering at the end of life is important. Doing so requires a comprehensive understanding of the course of suffering for patients with cancer during their last year of life. This study describes trajectories of psychological, spiritual, physical, and functional suffering in the last year of life among patients with a solid metastatic cancer., Patients and Methods: We conducted a prospective cohort study of 600 patients with a solid metastatic cancer between July 2016 and December 2019 in Singapore. We assessed patients' psychological, spiritual, physical, and functional suffering every 3 months until death. Data from the last year of life of 345 decedents were analyzed. We used group-based multitrajectory modeling to delineate trajectories of suffering during the last year of a patient's life., Results: We identified 5 trajectories representing suffering: (1) persistently low (47% of the sample); (2) slowly increasing (14%); (3) predominantly spiritual (21%); (4) rapidly increasing (12%); and (5) persistently high (6%). Compared with patients with primary or less education, those with secondary (high school) (odds ratio [OR], 3.49; 95% CI, 1.05-11.59) education were more likely to have rapidly increasing versus persistently low suffering. In multivariable models adjusting for potential confounders, compared with patients with persistently low suffering, those with rapidly increasing suffering had more hospital admissions (β=0.24; 95% CI, 0.00-0.47) and hospital days (β=0.40; 95% CI, 0.04-0.75) during the last year of life. Those with persistently high suffering had more hospital days (β=0.70; 95% CI, 0.23-1.17)., Conclusions: The course of suffering during the last year of life among patients with cancer is variable and related to patients' hospitalizations. Understanding this variation can facilitate clinical decisions to minimize suffering and reduce healthcare costs at the end of life.

Objective: We investigated patient-reported roles of families, physicians, and patients themselves in treatment decision making and whether discordance between perceived and preferred roles is associated with psychological distress and perceived quality of care among patients with cancer., Methods: We analyzed cross-sectional survey data from 599 adults with stage IV solid malignancy in Singapore. Stuart-Maxwell tests were used to compare patients' perceived and preferred roles in decision making. Types of discordance were categorized as follows: involvement at a lesser level than preferred, involvement at a greater level than preferred, and no change in patient involvement. Ordinary least squares regressions examined the associations between types of discordance and patient outcomes, controlling for patient characteristics., Results: Discordance between perceived and preferred roles was observed in 16% of patients. Amongst patients with discordance, 33% reported being involved at a lesser level than they preferred, 47% reported being involved at a greater level than they preferred, and 19% reported discordance where level of patient involvement did not change. Multivariable analyses showed that lesser involvement than preferred and discordance with no change in patient involvement were associated with poorer quality of physician communication (β = - 9.478 [95% confidence interval {CI} - 16.303 to - 2.653] and β = - 9.184 [95% CI - 18.066 to - 0.301]) and poorer care coordination (β = - 11.658 [95% CI - 17.718 to - 5.597] and β = - 8.856 [95% CI - 16.744 to - 0.968]) compared with concordance., Conclusions: Most patients reported participating at their desired level. Despite this finding, our results suggest that involving patients at a lesser level than they prefer can lead to poorer perceived quality of physician communication and care coordination and that encouraging patient participation is a safe approach to minimizing poor outcomes., (© 2021. Springer Nature Switzerland AG.)

Background: Advance care planning (ACP) involves documentation of patients' preferred place of death (PoD). This assumes that patients' preferred PoD will not change over time; yet, evidence for this is inconclusive. We aimed to assess the extent and correlates of change in patients' preferred PoD over time., Materials and Methods: Using data from a cohort study of patients with advanced cancer in Singapore, we analyzed preferred PoD (home vs institution including hospital, hospice, and nursing home vs unclear) among 466 patients every 6 months for a period of 2 years. At each time point, we assessed the proportion of patients who changed their preferred PoD from the previous time point. Using a multinomial logistic regression model, we assessed patient factors (demographics, understanding of disease stage, ACP, recent hospitalization, quality of life, symptom burden, psychologic distress, financial difficulty, prognosis) associated with change in their preferred PoD., Results: More than 25% of patients changed their preferred PoD every 6 months, with no clear trend in change toward home or institution. Patients psychologically distressed at the time of the survey had increased likelihood of changing their preferred PoD to home (relative risk ratio [RRR], 1.02; 95% CI, 1.00-1.05) and to an institution (RRR, 1.06; 95% CI, 1.02-1.10) relative to no change in preference. Patients hospitalized in the past 6 months were more likely to change their preferred PoD to home (RRR, 1.56; 95% CI, 1.07-2.29) and less likely to change to an institution (RRR, 0.50; 95% CI, 0.28-0.88) relative to no change in preference., Conclusions: The present study provides evidence of instability in the preferred PoD of patients with advanced cancer. ACP documents need to be updated regularly to ensure they accurately reflect patients' current preference.

Aim: To investigate prognostic awareness, preference for prognostic information, and perceived and preferred roles in decision making among patients with advanced cancer in Myanmar., Methods: A cross-sectional survey was administered at the Yangon General Hospital to stage 4 cancer patients who were at least 21 years old and aware of their cancer diagnosis. Patients were asked questions about their prognosis, participation in treatment decisions, sociodemographic and clinical information. Data from 131 patients were analyzed using descriptive statistics and logistic regressions., Results: Only 15% of patients surveyed were aware that their cancer was advanced and only a quarter (26%) of patients knew that treatment intent was noncurative. The likelihood of treatment-intent awareness was higher among patients who were male, high income, and aware that they had advanced cancer. Roughly 60% of patients reported playing an active or collaborative role in treatment decisions, with a strong preference (59%) for the latter. For the majority of patients (69%), perceived and preferred roles in decision making were the same. Sociodemographic characteristics did not predict perceived and preferred roles in decision making., Conclusions: This is the first effort to analyze prognostic awareness and decision-making practices among advanced cancer patients in Myanmar. Patients had inadequate knowledge on their disease progression and intent of treatment. Yet, the majority of them were keen to be involved in treatment decisions., (© 2020 John Wiley & Sons Australia, Ltd.)

Background: A systematic understanding of socio-economic inequalities in end-of-life (EOL) suffering among advanced cancer patients is required to inform efforts to reduce these inequalities as part of Universal Health Coverage goals., Aims: To assess inequalities in multiple domains of EOL suffering among advanced cancer patients - physical, functional, psychological, social, and spiritual -, using two socio-economic status (SES) indicators, education and perceived economic status of the household., Methods: We used cross-sectional data from surveys of stage IV cancer patients (n = 1378) from seven hospitals across five countries (China, Sri Lanka, India, Vietnam and Myanmar). We conducted separate multivariable linear regression models for each EOL suffering domain. We also tested interactions between the two SES indicators and between each SES indicator and patient age., Results: Patients living in low economic status households /with fewer years of education reported greater suffering in several domains. We also found significant interaction effects between economic status of the household and years of education for all EOL suffering outcomes. Age significantly moderated the association between economic status of the household and social suffering and between years of education and psychological, social, and spiritual suffering (p < 0.05 for all)., Conclusion: Results highlight that SES inequalities in EOL suffering vary depending on the suffering domain, the SES indicator assessed, and by patient age. Greater palliative care resources for patients with low SES may help reduce these inequalities.

Background: The Universal Health Coverage goals call for access to affordable palliative care to reduce inequities in "total pain" and suffering. To achieve this, a patient-centred understanding of these inequities is required., Aim: To assess association of total pain and suffering (i.e. physical, psychological, social, and spiritual health outcomes) and perceived health care quality with financial difficulties among stage IV solid malignancy patients., Design: Using baseline data from the COMPASS cohort study, we assessed total pain and suffering including physical (physical and functional well-being, pain, symptom burden), psychological (anxiety, depression, emotional well-being), social (social well-being), and spiritual (spiritual well-being, hope) outcomes and perceived health care quality (physician communication, nursing care, and coordination/responsiveness). Financial difficulties were scored by assessing patient perception of the extent to which their resources were meeting expenses for their treatments, daily living, and other obligations. We used multivariable linear/logistic regression to test association between financial difficulties and each patient-reported outcome., Setting/participants: Six hundred stage IV solid malignancy patients in Singapore., Results: Thirty-five percent reported difficulty in meeting expenses. A higher financial difficulties score was associated with worse physical, psychological, social, spiritual outcomes, and lower perceived quality of health care coordination and responsiveness (i.e. greater total pain and suffering) (all p < 0.05). These associations persisted after adjustment for socio-economic indicators., Conclusion: Results identify advanced cancer patients with financial difficulties to be a vulnerable group with greater reported total pain and suffering. A holistic patient-centred approach to care at end-of-life may help meet goals for Universal Health Coverage.

Background: Patients with advanced cancer often experience poor health-related quality-of-life (HRQoL) due to cancer and treatment-related side-effects. With India's palliative care landscape in its infancy, there is a concern that advanced cancer patients, especially individuals who are from disadvantaged populations experience poor HRQoL outcomes. We aim to assess HRQoL of advanced cancer patients in terms of general well-being (physical, functional, emotional, and social/family well-being), pain experiences, psychological state, and spiritual well-being, and determine the relationship between belonging to a disadvantaged group and HRQoL outcomes. We hypothesize that patients from disadvantaged or minority backgrounds, identified in this paper as financially distressed, female, lower years of education, lower social/family support, minority religions, and Non-General Castes, would be associated with worse HRQoL outcomes compared to those who are not from a disadvantaged group., Methods: We administered a cross-sectional survey to 210 advanced cancer patients in a regional cancer center in India. The questionnaire included standardized instruments for general well-being (FACT-G), pain experiences (BPI), psychological state (HADS), spiritual well-being (FACT-SP); socio-economic and demographic characteristics., Results: Participants reported significantly lower general well-being (mean ± SD) (FACT-G = 62.4 ± 10.0) and spiritual well-being (FACT-SP = 32.7 ± 5.5) compared to a reference population of cancer patients in the U.S. Patients reported mild to moderate pain severity (3.2 ± 1.8) and interference (4.0 ± 1.6), normal anxiety (5.6 ± 3.1) and borderline depressive symptoms (9.7 ± 3.3). Higher financial difficulty scores predicted most of the HRQoL domains (p ≤ 0.01), and being from a minority religion predicted lower physical well-being (p ≤ 0.05) and higher pain severity (p ≤ 0.05). Married women reported lower social/family well-being (p ≤ 0.05). Pain severity and interference were significant predictors of most HRQoL domains., Conclusions: Advanced cancer patients, especially those with lower financial well-being and belonging to minority religions, reported low physical, functional, emotional, social/family, and spiritual well-being, and borderline depressive symptoms. Future studies should be directed at developing effective interventions supporting vulnerable groups such as those with financial distress, and those belonging to minority religions.

Background: Patients with advanced cancer often have to make difficult decisions, such as how much to spend on moderately life-extending treatments. This and other end-of-life decisions are also influenced by their informal caregivers. Understanding the relative value that patients and their caregivers place on various aspects of end-of-life care can help clinicians tailor treatments to best meet the preferences of their patients., Aim: To quantify willingness to pay of patients with advanced cancer and their caregivers to extend the patients' life by 1 year and to compare this result to their willingness to pay for other end-of-life improvements., Design: Cross-sectional survey using a discrete choice experiment., Participants: A total of 211 patients with stage IV cancer and their informal caregivers., Results: The willingness to pay of patients to extend their life by 1 year (S$18,570; 95% confidence interval: S$6687-S$30,542) was not statistically different from their willingness to pay to avoid severe pain (S$22,199; S$11,648-S$32,450), to die at home (S$31,256; S$21,249-S$41,391), not be a burden on family and friends (S$4051; -S$3543 to S$11,568), or to receive a high-quality health-care experience (S$16,191; S$9266-S$23,037). Consistent with our hypothesis, caregivers had a greater willingness to pay than patients to extend life (S$61,368; S$37,030-S$86,210) and for most other end-of-life improvements., Conclusion: Results highlight the importance of pain management, supporting home deaths, and addressing other end-of-life concerns, in addition to efforts to extend life. Differences in willingness to pay of patients and caregivers suggest the need for eliciting patient preferences during treatment decision making as opposed to relying on caregiver input., (© The Author(s) 2015.)