Navigating Public Policy Responses to a Pandemic: The Balancing Act Between Physical Health, Mental Health, and Household Income.

OBJECTIVE: During COVID-19, governments imposed restrictions that reduced pandemic-related health risks but likely increased personal and societal mental health risk, partly through reductions in household income. This study aimed to quantify the public's willingness to accept trade-offs between pandemic health risks, household income reduction, and increased risk of mental illness that may result from future pandemic-related policies. METHODS: A total of 547 adults from an online panel participated in a discrete choice experiment where they were asked to choose between hypothetical future pandemic scenarios. Each scenario was characterized by personal and societal risks of dying from the pandemic, experiencing long-term complications, developing anxiety/depression, and reductions in household income. A latent class regression was used to estimate trade-offs. RESULTS: Respondents state a willingness to make trade-offs across these attributes if the benefits are large enough. They are willing to accept 0.8% lower household income (0.7-1.0), 2.7% higher personal risk of anxiety/depression (1.8-3.6), or 3.2% higher societal rate of anxiety/depression (1.7-4.7) in exchange for 300 fewer deaths from the pandemic. CONCLUSION: Results reveal that individuals are willing to accept lower household income and higher rates of mental illness, both personal and societal, if the physical health benefits are large enough. Respondents placed greater emphasis on maintaining personal, as opposed to societal, mental health risk and were most interested in preventing pandemic-related deaths. Governments should consider less restrictive policies when pandemics have high morbidity but low mortality to avoid the prospect of improving physical health while simultaneously reducing net social welfare.

Unravelling complex choices: multi-stakeholder perceptions on dialysis withdrawal and end-of-life care in kidney disease.

BACKGROUND: For patients on dialysis with poor quality of life and prognosis, dialysis withdrawal and subsequent transition to palliative care is recommended. This study aims to understand multi-stakeholder perspectives regarding dialysis withdrawal and identify their information needs and support for decision-making regarding withdrawing from dialysis and end-of-life care. METHODS: Participants were recruited through purposive sampling from eight dialysis centers and two public hospitals in Singapore. Semi-structured in-depth interviews were conducted with 10 patients on dialysis, 8 family caregivers, and 16 renal healthcare providers. They were held in-person at dialysis clinics with patients and caregivers, and virtually via video-conferencing with healthcare providers. Interviews were audio-recorded, transcribed, and thematically analyzed. The Ottawa Decision Support Framework's decisional-needs manual was used as a guide for data collection and analysis, with two independent team members coding the data. RESULTS: Four themes reflecting perceptions and support for decision-making were identified: a) poor knowledge and fatalistic perceptions; b) inadequate resources and support for decision-making; c) complexity of decision-making, unclear timing, and unpreparedness; and d) internal emotions of decisional conflict and regret. Participants displayed limited awareness of dialysis withdrawal and palliative care, often perceiving dialysis withdrawal as medical abandonment. Patient preferences regarding decision-making ranged from autonomous control to physician or family-delegated choices. Cultural factors contributed to hesitancy and reluctance to discuss end-of-life matters, resulting in a lack of conversations between patients and providers, as well as between patients and their caregivers. CONCLUSIONS: Decision-making for dialysis withdrawal is complicated, exacerbated by a lack of awareness and conversations on end-of-life care among patients, caregivers, and providers. These findings emphasize the need for a culturally-sensitive tool that informs and prepares patients and their caregivers to navigate decisions about dialysis withdrawal and the transition to palliative care. Such a tool could bridge information gaps and stimulate meaningful conversations, fostering informed and culturally aligned decisions during this critical juncture of care.

Quality of life and its predictors among patients with metastatic cancer in Bangladesh: the APPROACH survey.

BACKGROUND: This study aimed to assess the health-related quality of life (HRQOL) (physical, functional, emotional, social, spiritual) and psychological (anxiety and depression) well-being and their associations with patient characteristics among patients with metastatic cancer in Bangladesh. METHODS: A convenience sample of 386 Bangladeshi patients with stage IV solid cancers was recruited from a palliative care outpatient department and an inpatient palliative center. Dependent variables included the physical, functional, emotional, social, and overall scores of the Functional Assessment of Cancer Therapy-General (FACT-G) scale, the Functional Assessment of Chronic Illness Therapy-Spiritual Well-being (FACIT-SP) scale, the anxiety, depression, and overall scores of the Hospital Anxiety and Depression (HADS) scale. Linear regressions examined the association between dependent variables and patient characteristics. RESULTS: A substantial proportion of Bangladeshi patients reported anxiety (59% of outpatients and 55% of inpatients) and depression (60% of outpatients and 73% of inpatients) symptoms. Generally, greater financial difficulty and symptom burden scores were associated with worse health outcomes. Older patients reported poorer functional and spiritual well-being but better anxiety scores. Females reported worse anxiety and depressive symptoms and physical well-being but better spiritual outcomes. CONCLUSIONS: Additional efforts must be directed at improving the HRQOL of patients with metastatic cancer in Bangladesh. Furthermore, assistance should be made more accessible to vulnerable groups, including women, the elderly, and those with financial difficulty.

The association of prognostic awareness with quality of life, spiritual well-being, psychological distress, and pain severity in patients with advanced cancer: Results from the APPROACH Study in Indonesia.

BACKGROUND AND OBJECTIVES: Advanced cancer patients' understanding of their illness is key for making informed treatment decisions. Despite the known importance of patients' awareness of their disease prognosis, it is debatable whether this awareness is positively, negatively, or not associated with clinical and psychological outcomes among patients with advanced cancer. This paper aims to determine the prevalence of and factors associated with prognostic awareness and its association with quality of life (QoL), spiritual well-being, pain control, and psychological distress in patients with advanced cancer in Indonesia. METHODS: This cross-sectional questionnaire-based survey was part of a multicountry study titled "Asian Patient Perspectives Regarding Oncology Awareness, Care and Health (APPROACH)." Patients were asked what they knew about their cancer and treatment. QoL and spiritual well-being were measured using the Functional Assessment of Cancer Therapy - General (FACT-G) and Functional Assessment of Chronic Illness Therapy - Spiritual Well-being (FACIT-Sp) questionnaire. Psychological distress experienced by patients was recorded via the Hospital Anxiety and Depression Scale. Pain severity was also assessed. Data from 160 patients were analyzed using descriptive statistics and multivariable regression models. RESULTS: Of the 160 patients who participated, 55 (34.4%) were unaware of their cancer stage. Those who were aware of their stage of cancer were younger than those who were not aware (45.7 years vs 50.4 years, p = .015). There was no significant difference in spiritual well-being and other domains of QoL between those who were aware and those who were not aware of their advanced cancer stage. There was also no significant difference in anxiety depression or pain severity, even after adjustment for demographic and clinical characteristics. SIGNIFICANT OF RESULTS: Given the high prevalence of patients who wrongly thought their cancer was curable, more could be done to improve disease and prognostic understanding among patients with advanced cancer in Indonesia. Those who were aware of their advanced cancer stage did not have a poorer QoL, nor did they have more anxiety or depression than those who were unaware. This finding suggests that concerns about the negative impact of prognostic disclosure may be unfounded.

A prospective cohort study of decision-making role preferences of patients with advanced cancer and their family caregivers.

BACKGROUND: This study aimed to examine (1) the evolution of patients-caregiver dyad decision-making role preferences over 3 years and the predictors of these preferences; and (2) discordance in decision-making role preferences among dyads. METHODS: A total of 311 patients with advanced solid cancer and their caregivers in Singapore reported their preferences for decision-making roles every 3 months. The predictors for decision-making role preferences among dyads were identified via the actor-partner interdependence framework using a mixed-effect ordered logistic model. RESULTS: The proportion of patients and caregivers preferring patient-led decision-making was higher at the end of third year compared to baseline (patients: 40% vs. 20%, p value <.01; caregivers: 33% vs. 21%, p value = .03). Patients with female (odds ratio [OR], 1.74; p value <.01) and older (1-year OR, 1.02; p value <.01) caregivers and younger patients (1-year OR, 0.97; p value <.01) preferred higher involvement in decision-making. Caregivers with tertiary education (vs. lower education) (OR, 1.59; p value = .02) and those who accurately understood patients' treatment goals (OR, 1.37; p value = .01) preferred greater patient involvement in decision-making. Conversely, caregivers of female patients (OR, 0.68; p value = .03) and younger patients (1-year OR, 0.98; p value <.01) preferred lesser patient involvement in decision-making. The proportion of patient-caregiver dyads with discordance in preferred decision-making was lower at the end of the third year (51%) compared to baseline (68%) (p value <.01). CONCLUSION: Despite a reduction in the proportion of dyads with discordance toward the end-of-life, the percentage with discordance remained high throughout the illness trajectory. Interventions facilitating open communication between dyads should be pursued in efforts to decrease dyadic discordance.

Changes in Prognostic Beliefs of Patients With Metastatic Cancer and Their Association With Changing Health Status.

BACKGROUND: Patients' prognostic beliefs are known to influence treatment decisions. However, the evolution of these beliefs over an extended period in patients with metastatic cancer is understudied. We assessed longitudinal changes in prognostic beliefs and investigated their association with patients' changing health status. METHODS: We surveyed a cohort of 600 patients with solid metastatic cancer every 9 months, up to 54 months. At each time point, we assessed whether patients believed their current treatments would cure them (responses classified as accurate, inaccurate, or uncertain belief) and tested the association of their response with symptom burden and recent unplanned hospital admission. RESULTS: Only 29% of patients had accurate prognostic belief at baseline, and 24% of patients changed from having accurate to uncertain/inaccurate belief at some point during follow-up. Patients who experienced greater symptom burden were less likely to report inaccurate (relative risk ratio [RRR], 0.87; 95% CI, 0.84-0.90) or uncertain prognostic belief (RRR, 0.90; 95% CI, 0.87-0.92), whereas those with a recent unplanned hospital admission were more likely to report inaccurate (RRR, 2.71; 95% CI, 1.48-4.94) or uncertain belief (RRR, 2.34; 95% CI, 1.34-4.07) compared with accurate belief. An increase in symptom burden was associated with change toward accurate belief (RRR, 1.75; 95% CI, 1.33-2.31) as opposed to no change. CONCLUSIONS: In our study of long-term changes in prognostic beliefs among patients with metastatic cancer, reported prognostic beliefs were unstable, changed from accurate to inaccurate/uncertain and vice versa, and were associated with their changing health status. Our findings imply that conversations about goals of care must occur regularly to factor in these changes.

Quality of life and psychological distress of patients with advanced cancer in the Philippines.

PURPOSE: This study aimed to describe the quality of life (QOL) and psychological distress (anxiety and depression) of Filipino patients with advanced solid cancers and identify sociodemographic and clinical-related factors associated with them. METHODS: 195 patients with advanced cancer were recruited from a major hospital treating cancer patients in the Philippines. Participants completed self-reported surveys on Quality-of-life (QOL-FACT-G) and psychological distress (HADS-D, HADS-A). Multi-variable OLS regression models were performed where sociodemographic, health history and clinical characteristics were included as predictors. RESULTS: The average total FACT-G score was 65.39/108 (Standard deviation (SD) = 13.76), with the physical well-being scale having the lowest scores (M = 14.14/28, SD = 5.92). The two most common symptoms reported were fatigue (88%) and pain (86.5%). Physical symptom burden was significantly negatively associated with QOL and psychological distress. The average HADS-total score was 14.46/21 (SD = 5.77), with 8% with probable anxiety and 27% with probable depression. Participants who reported greater reliance on their spiritual faith for strength in coping with illness reported lower depression scores. CONCLUSIONS: Our findings underline the importance of understanding the multi-dimensional outcomes of Filipino advanced cancer patients. Results may be used to improve QOL and reduce the psychological distress of advanced cancer patients.

The associations between prognostic awareness and health-related quality of life among patients with advanced cancer: A systematic review.

BACKGROUND: Prognostic awareness among patients with advanced cancer is important for better palliative and end-of-life care. However, the relationships between prognostic awareness and patient health-related quality of life outcomes remain inconsistent across studies. Critically synthesizing empirical literature will allow for a better understanding of these associations. AIM: To investigate the associations between prognostic awareness and health-related quality of life outcomes among patients with advanced cancer. DESIGN: This study was a systematic review, prospectively registered on PROSPERO (CRD42020177228). DATA SOURCES: Seven databases (PubMed/Medline, Embase, Scopus, Cochrane Central, PsycINFO, CINAHL, and Web of Science) were searched in March 2022. Cross-sectional and longitudinal empirical studies in English were included regardless of cancer type or publication date. RESULTS: We identified 1338 articles and included 36 for review. A substantial proportion of patients remained prognostically unaware (50%). Prognostic awareness was either not significantly associated (48%) or associated with worsened (40%) outcomes. These associations were found to vary (e.g., be differently associated with improved, worsened, or non-significant health-related quality of life outcomes) based on the definition of prognostic awareness used and the population sampled (Asian vs Western). Few structured, validated questionnaires were used and only three studies investigated how the associations evolved over time. CONCLUSIONS: To facilitate better understanding of the relationships between prognostic awareness and health-related quality of life, future research must focus on developing a standardized, "gold standard" measurement of prognostic awareness. Research should also examine the influence of culture and the evolution of these relationships longitudinally.

Stroke survivors' preferences for post-stroke self-management programs: A discrete choice experiment.

BACKGROUND AND PURPOSE: Self-management programs enhance survival in stroke patients. However, they require patient-centered designs to be effective. The aim of this study was therefore to investigate the type of post-stroke self-management programs that appeal to stroke survivors, and to estimate their willingness to participate in such programs. METHODS: A Discrete Choice Experiment was administered to patients who had either a transient ischemic attack (TIA) or stroke within the past 3 years and were cognitively intact (i.e., stroke survivors). Stroke survivors were presented with eight choice tasks and asked to choose between 'No Program' and two hypothetical post-stroke management programs that varied by six attributes: Topics covered by the program; schedule of the program; frequency and duration of the sessions; number of participants; out-of-pocket registration fee for the whole program; and rewards for completing the program. RESULTS: The analysis involved 146 stroke survivors. Based on the mixed logit model, the predicted willingness to participate ranged from 53% to 76%. The most popular characteristics in a program were topics on health education and risk management, being scheduled during weekends as four sessions that are each 2 hours long and involve four participants, a registration fee of SGD50 (∼USD36), and SGD500 (∼USD359) reward for program completion. CONCLUSIONS: Interest in post-stroke self-management programs was high, with at least half of the sample showing interest in participating in these programs. Program features such as focusing on health education and risk management, charging a low registration fee, and offering incentives helped to increase the demand.

Associations Between Prognostic Awareness, Acceptance of Illness, and Psychological and Spiritual Well-being Among Patients With Heart Failure.

BACKGROUND: This study aimed to (1) investigate the association of prognostic awareness with psychological (distress level and emotional well-being) and spiritual well-being among patients with heart failure, and (2) assess the main and moderating effects of illness acceptance on the relationship between prognostic awareness and psychological and spiritual well-being. METHODS AND RESULTS: This study used baseline data of a Singapore cohort of patients with heart failure (N = 245) who had New York Heart Association class 3 or 4 symptoms. Patients reported their awareness of prognosis and extent of illness acceptance. Multivariable linear regressions were used to investigate the associations. Prognostic awareness was not significantly associated with psychological and spiritual well-being. Illness acceptance was associated with lower levels of distress (ß [SE] = -0.9 [0.2], P < .001), higher emotional well-being (ß [SE] = 2.2 [0.4], P < .001), and higher spiritual well-being (ß [SE] = 5.4 [0.7], P < .001). Illness acceptance did not moderate the associations of prognostic awareness with psychological and spiritual well-being. CONCLUSIONS: This study suggests that illness acceptance could be a key factor in improving patient well-being. Illness acceptance should be regularly assessed and interventions to enhance illness acceptance should be considered for those with poor acceptance.

Healthcare Cost Trajectories in the Last 2 Years of Life Among Patients With a Solid Metastatic Cancer: A Prospective Cohort Study.

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 (ß [SE], 0.75 [0.37]; P=.04) and a greater preference for life extension (ß [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.

Trajectories of physical symptom burden and psychological distress during the last year of life in patients with a solid metastatic cancer.

OBJECTIVE: To delineate the trajectories of physical symptoms and psychological distress among patients with a solid metastatic cancer during the last year of life. METHODS: We used data of 345 decedents from a prospective cohort of 600 patients with a Stage IV solid cancer. Using group-based trajectory modelling, we assessed (a) demographic (age, gender, education, cancer site) predictors of trajectory membership, (b) shift in trajectories associated with planned and unplanned hospitalizations, emergency room visits and chemotherapy, and (c) the association between trajectory membership and place of death. RESULTS: We identified three trajectories of physical symptoms-"persistent mild" (56%), "progressive moderate" (36%), and "progressive severe" (8%), and two for psychological distress-"persistent mild" (72%) and "progressive distress" (28%). Females (ß = 1.40 [SE = 0.55], p-value = 0.01) and highly educated patients (ß = 1.46 [SE = 0.62], p-value = 0.02) were more likely to experience progressive severe symptoms compared to persistent mild symptoms. Older patients were less likely (ß = -1.01 [SE = 0.33], p-value = 0.003), while those with gynecological cancers (ß = 1.51 [SE = 0.65], p-value = 0.02) were more likely to experience progressive distress compared to persistent mild distress. Planned and unplanned hospitalizations, emergency room visits, and chemotherapy were associated with a worsening in trajectories. Patients with higher distress were more likely to die in a hospice compared to a hospital. CONCLUSIONS: Interventions to improve physical symptoms and distress can focus on patients at risk of being in worse trajectories and at critical time points in the last year of life-hospitalizations, emergency room visits, and chemotherapy.

Perceived stigma and its correlates among Asian patients with advanced cancer: A multi-country APPROACH study.

OBJECTIVES: Perceived cancer-related stigma can affect mental health and potentially treatment choices for patients with cancer. Nevertheless, perceived stigma is not very well understood in Asia. This study investigated across six developing Asian countries: (1) the prevalence of perceived stigma among advanced cancer patients, (2) its risk factors, and (3) its association with patient treatment preferences. METHODS: This cross-sectional study recruited patients receiving oncology care across major hospitals in Bangladesh, China, India, Philippines, Sri Lanka and Vietnam. Participants (N = 1358) were adults diagnosed with stage IV metastatic solid cancer who completed self-reported surveys. Multi-variable logistic regression and ordered logit models examined the associations with perceived stigma and variables of interest. RESULTS: Across the countries, 35%, 95% CI [32%, 38%] of patients reported experiencing at least one facet of cancer-related stigma often or always, while 60% [57%, 63%] reported it occurring occasionally. Top-endorsed facets of perceived stigma across the Asian countries suggest a distinct pattern. Having knowingly engaged in health-risk behaviours (OR = 2.03-2.24, 95% CI [1.14-1.19, 3.43-4.41]), unemployment (2.64 [1.67, 4.19]) and body image change (1.57 [1.00, 2.45]) were associated with higher odds of perceived stigma, while time mitigated perceived stigma (0.49-0.65 [0.30-0.45, 0.76-0.92]). Perceived stigma was associated with lower odds of preference for life-extending treatments, although the associations did not hold up in the adjusted model. CONCLUSIONS: Perceived stigma is unique among Asian advanced cancer patients. Stigma is important to assess and address, taking into consideration the various sociodemographic, clinical and psychological factors of cancer patients.

Preferences for a non-invasive prenatal test as first-line screening for Down Syndrome: A discrete choice experiment.

OBJECTIVE: To investigate preferences of pregnant women for the characteristics of prenatal testing, and to quantify their willingness-to-pay (WTP) for non-invasive prenatal testing (NIPT) as first-line screening for Down Syndrome. METHOD: A cross-sectional discrete choice experiment survey including five testing attributes was administered to 192 pregnant women (≤14 weeks' gestation) who were aged ≥21 years in Singapore. We calculated marginal WTP for improvements in testing characteristics and NIPT. RESULTS: We identified two groups of women with distinct preferences for prenatal testing. Women aged ≥35 years, with at least a university education, and with intention to terminate pregnancy of an affected fetus were more likely to be in the group with higher WTP for improvements in test characteristics. While participants valued increased detection rate and lower screen positive rate associated with NIPT, they also valued no risk of test failure and ability to test for birth defects using standard testing. The participants, on average, were not willing to pay for NIPT over the standard testing as a first-line screening test. CONCLUSIONS: As a first-line screening, NIPT was not preferred over standard testing. The prenatal consultations should focus on each testing characteristic equally as our findings show diverse preferences for testing characteristics.

Predictors of Hypothyroidism Following Empirical Dose Radioiodine in Toxic Thyroid Nodules: Real-Life Experience.

OBJECTIVE: We aimed to determine the factors predicting hypothyroidism after radioactive iodine (RAI) treatment in patients with toxic adenoma and toxic multinodular goiter. METHODS: We retrospectively collected the data of 237 patients with toxic multinodular goiter or toxic adenoma who had consecutively received RAI treatment between 2014 and 2020 at 2 medical centers. Patients who received the second RAI treatment and whose medical records could not be accessed were excluded from the study. Finally, 133 patients were included in the study. RAI was administered at an empirical dose of 15 or 20 mCi. RESULTS: The median age of the 133 participants was 69 years (interquartile range, 62-75 years), and 64.7% of the participants were women. A total of 42.1% of the patients had toxic adenoma, whereas 57.9% of patients had toxic multinodular goiter. The median follow-up was 24 months (interquartile range, 11-38 months). During the follow-up, 61.7% of patients became euthyroid, 30.8% developed hypothyroidism, and 7.5% remained hyperthyroid. The median month of hypothyroidism onset was 4 months (interquartile range, 2-9 months). Regression analysis revealed 2 factors that could predict hypothyroidism: thyroid-stimulating hormone (odds ratio, 2.548; 95% CI, 1.042-6.231; P = .04) and thyroid volume (odds ratio, 0.930; 95% CI, 0.885-0.978; P = .005). CONCLUSION: Overall, 30.8% of the cases developed hypothyroidism after the RAI treatment. Approximately 78% of hypothyroidism developed within the first 10 months. The risk of hypothyroidism was higher in patients with higher thyroid-stimulating hormone and smaller thyroid volume.

A prospective cohort study assessing aggressive interventions at the end-of-life among patients with solid metastatic cancer.

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 .

Trajectories of Health-related quality of life in patients with Advanced Cancer during the Last Year of Life: findings from the COMPASS study.

BACKGROUND: Patients with advanced cancer prioritise health-related quality of life (HrQoL) in end-of-life care, however an understanding of pre-death HrQoL trajectories is lacking. We aimed to delineate and describe the trajectories of physical, social, emotional and functional HrQoL during last year of life among advanced cancer patients. We assessed associations between these trajectories and patient socio-demographic characteristics, healthcare use and place of death. METHODS: We used data from 345 decedents from a prospective cohort study of 600 patients with a solid advanced cancer receiving secondary care at public hospitals in Singapore. Patients were surveyed every three months until death and HrQoL was assessed using the Functional Assessment of Cancer Therapy - General (FACT-G) questionnaire. Interviews were conducted between July 2016 and December 2019. Group-based multi-trajectory modelling was used to assess potential heterogeneity in the four HrQoL dimensions during patients' last year of life. RESULTS: We identified four distinct trajectories of HrQoL - (1) overall high HrQoL (47% of sample), (2) progressively decreasing HrQoL (32%), (3) asymmetric decline in HrQoL (13%), (4) overall low HrQoL (8%). Compared to patients with secondary or above education, those with primary education or less (ß = 1.39, SE = 0.55, p-value = 0.012) were more likely to have "progressively decreasing HrQoL" or "overall low HrQoL" in contrast to "overall high HrQoL". Compared to patients with 'overall high HrQoL', those with 'overall low HrQoL' had longer length of hospital stay during the last year of life (ß = 0.47, SE = 0.21, p-value = 0.026) and were more likely to die in a hospice/care home (ß = 1.86, SE = 0.66, p-value = 0.005). CONCLUSION: Our results showed heterogeneity in deterioration of HrQoL among patients with advanced cancer in the last year of life. Systematic monitoring of HrQoL, early identification and referral of high-risk patients to palliative care may provide timely relief and mitigate the steep decline in their HrQoL. TRIAL REGISTRATION: NCT02850640.

Disparities in end-of-life outcomes among advanced cancer patients in Sri Lanka: Results from the APPROACH study.

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.

Experiences with health care practitioners among advanced cancer patients and their family caregivers: A longitudinal dyadic study.

BACKGROUND: Assessing patient and caregiver experiences with care is central to improving care quality. The authors assessed variations in the experiences of advanced cancer patients and their caregivers with physician communication and care coordination by patient and caregiver factors. METHODS: The authors surveyed 600 patients with a stage IV solid malignancy and 346 caregivers every 3 months for more than 2 years. Patients entered the cohort any time during their stage IV trajectory. The analytic sample was restricted to patient-caregiver dyads (n = 299). Each survey assessed patients' experiences with physician communication and care coordination; patients' symptom burden; caregivers' quality of life; and patients' and caregivers' anxiety, financial difficulties, and perceptions of treatment goals. An actor-partner interdependence framework was used for analysis. RESULTS: Patients reported better physician communication (average marginal effect [AME], 6.04; 95% confidence interval [CI], 3.82 to 8.26) and care coordination (AME, 8.96; 95% CI, 6.94 to 10.97) than their caregivers. Patients reported worse care coordination when they (AME, -0.56; 95% CI, -1.07 to -0.05) or their caregivers (AME, -0.58; 95% CI, -0.97 to -0.19) were more anxious. Caregivers reported worse care coordination when they were anxious (AME, -1.62; 95% CI, -2.02 to -1.23) and experienced financial difficulties (AME, -2.31; 95% CI, -3.77 to -0.86). Correct understanding of the treatment goal (vs being uncertain) was associated with caregivers reporting physician communication as better (AME, 3.67; 95% CI, 0.49 to 6.86) but with patients reporting it as worse (AME, -3.29; 95% CI, -6.45 to -0.14). CONCLUSIONS: Patients' and caregivers' reports of physician communication and care coordination vary with aspects of their own and each other's well-being and with their perceptions of treatment goals. These findings may have implications for improving patients' and caregivers' reported experiences with health care practitioners.

Who Would Pay Higher Taxes for Better Mental Health? Results of a Large-Sample National Choice Experiment.

Policy Points  Public funding for mental health programs must compete with other funding priorities in limited state budgets.  Valuing state-funded mental health programs in a policy-relevant context requires consideration of how much benefit from other programs the public is willing to forgo to increase mental health program benefits and how much the public is willing to be taxed for such program benefits.  Taxpayer resistance to increased taxes to pay for publicly funded mental health programs and perceived benefits of such programs vary with state population size.  In all states, taxpayers seem to support increased public funding for mental health programs such as state Medicaid services, suggesting such programs are underfunded from the perspective of the average taxpayer. CONTEXT: The direct and indirect impacts of serious mental illness (SMI) on health care systems and communities represents a significant burden. However, the value that community members place on alleviating this burden is not known, and SMI treatment must compete with a long list of other publicly funded priorities. This study defines the value of public mental health interventions as what the public would accept, either in the form of higher taxes or in reductions in nonhealth programs, in return for increases in the number of mental health program beneficiaries. METHODS: We developed and fielded a best-practice discrete-choice experiment survey to quantify respondents' willingness to be taxed for increased spending among several competing programs, including a program for treating severe mental health conditions. A realistic decision frame was used to elicit respondents' willingness to support expanded state budgets for mental health programs if that expansion required either cuts in the competing publicly financed programs or tax increases. The survey was administered to a general population national sample of 10,000 respondents. FINDINGS: Nearly half the respondents in our sample either chose "no budget increase" for all budget scenarios or had preferences that were too disordered to estimate trade-off values. Including zero values for those respondents, we found that the mean (median) amount that all respondents were willing to be taxed annually for public mental health programs ranged between $156 ($99) per year for large-population states and $343 ($181) per year for small-population states. Respondents would accept reductions of between 1.6 and 3.4 beneficiaries in other programs in return for 1 additional mental health program beneficiary. CONCLUSIONS: Our results are consistent with findings that a substantial portion of the US public is unwilling to pay higher taxes. Nevertheless, even including the substantial number of respondents who opposed any tax increase, the willingness of both the mean and median respondent to be taxed for mental health program expansions implies that programs providing mental health services such as state Medicaid are underfunded.