Can Timely Outpatient Visits Reduce Readmissions and Mortality Among Heart Failure Patients?

BACKGROUND: Outpatient follow-up after a hospital discharge may reduce the risk of readmissions, but existing evidence has methodological limitations. OBJECTIVES: To assess effect of outpatient follow-up within 7, 14, 21 and 30 days of a hospital discharge on 30-day unplanned readmissions or mortality among heart failure (HF) patients; and whether this varies for patients with different clinical complexities. DESIGN: We analyzed medical records between January 2016 and December 2021 from a prospective cohort study. Using time varying mixed effects parametric survival models, we examined the association between not having an outpatient follow-up and risk of adverse events. We used interaction models to assess if the effect of outpatient follow-up visit on outcomes varies with patients' clinical complexity (comorbidities, grip strength, cognitive impairment and length of inpatient stay). PARTICIPANTS: Two hundred and forty-one patients with advanced HF. MAIN MEASURES: 30-day all-cause (or cardiac) adverse event defined as all cause (or cardiac) unplanned readmissions or death within 30 days of an unplanned all-cause (or cardiac) admission or emergency department visit. KEY RESULTS: We analyzed 1595 all-cause admissions, inclusive of 1266 cardiac admissions. Not having an outpatient follow-up (vs having an outpatient follow-up) significantly increased the risk of 30-day all-cause adverse event. (risk [95% CI] - 14 days: 35.1 [84.5,-1.1]; 21 days: 43.9 [48.2,6.7]; 30 days: 31.1 [48.5, 7.9]) The risk (at 21 days) was higher for those with one co-morbidity (0.25 [0.11,0.58]), mild (0.67 [0.45, 1.00]) and moderate cognitive impairment (0.38 [0.17, 0.84]), normal grip strength (0.57 [0.34, 0.96]) and length of inpatient stay 7-13 days (0.45 [0.23, 0.89]). CONCLUSION: Outpatient follow-up within 30 days after a hospital discharge reduced risk of 30-day adverse events among HF patients, the benefit varying according to clinical complexity. Results suggest the need to prioritize patients who benefit from outpatient follow-up for these visits.

'I secretly wish. . .' Caregivers' expression of wish for death of persons with severe dementia.

BACKGROUND: Qualitative evidence suggests that caregivers may express a wish for death of persons with severe dementia (PwSD). No study has assessed the extent to which it happens, stability of this wish over time and the factors associated with it. OBJECTIVES: We examined caregivers' wish for death of PwSDs overtime and the factors associated with this wish. METHODS: 215 caregivers of community dwelling PwSDs were surveyed every 4 months for 2 years. Using the mixed-effects multinomial regression model, we assessed the PwSD and caregiver factors associated with caregivers' wish for PwSDs' death. RESULTS: At baseline, 27% caregivers expressed a wish for PwSDs' life to end sooner. Overall, 43% of the caregivers expressed a wish for PwSDs' death at least once during the study period and 11% expressed it consistently. Caregivers' perception of PwSDs' lower quality of life (RRR: 1.05, 95% CI: 1.00, 1.10), higher functional dependency (RRR: 1.1, 95% CI: 1.01, 1.21), eating difficulty (RRR: 2.25, 95% CI: 1.26, 4.04) and suffering (RRR: 1.92, 95% CI: 1.05, 3.52) were associated with this wish. Caregivers who were emotionally close to PwSDs were less likely (RRR: 0.25, 95% CI: 0.11, 0.55) while those who understood that dementia is a terminal illness were more likely (RRR: 2.01, 95% CI: 1.03, 3.92) to express this wish. CONCLUSION: Caregivers' wish for PwSDs' death changed over time and was primarily driven by their perception of PwSDs' poor well-being and awareness of their illness being terminal, indicating a need for increased support in this challenging caregiving context.

Trajectories of negative and positive experiences of caregiving for older adults with severe dementia: application of group-based multi-trajectory modelling.

BACKGROUND: Family caregivers of older adults with severe dementia have negative and positive experiences over the course of caregiving. We aimed to delineate joint trajectories (patterns over time) for negative and positive experiences, identify risk factors associated with membership of joint trajectories, and ascertain the association between joint trajectories and caregivers' outcomes after the death of the older adult. METHODS: Two hundred fifteen family caregivers of older adults with severe dementia in Singapore were surveyed every 4 months for 2 years, and 6 months after the death of the older adult. Using group-based multi trajectory modelling, we delineated joint trajectories for positive (Gain in Alzheimer Care Instrument) and negative (sub-scales of modified Caregiver Reaction Assessment) experiences of caregiving. RESULTS: We identified four joint trajectories - "very high positive, low negative" (23% of caregivers), "high positive, moderate negative" (28%), "very high positive, moderate negative" (28%), and "high positive, high negative" (21%). Caregivers of older adults with more behavioural symptoms, and who did not receive strong emotional support from family were more likely to have "high positive, moderate negative" or "very high positive, moderate negative" trajectory. Compared to caregivers with "very high positive, low negative" trajectory, caregivers with "very high positive, moderate negative" or "high positive, high negative" trajectories expressed greater grief and distress, with the latter also having lower spiritual well-being and quality of life at 6 months after the death of the older adult. CONCLUSION: The caregiving experiences for older adults with severe dementia vary between caregivers but remain stable over time. Modifiable risk factors identified for trajectories involving negative experiences of caregiving may be targeted in future interventions to improve the experience of caregiving and caregiver quality of life and distress after the death of the older adult. TRIAL REGISTRATION: http://www. CLINICALTRIALS: gov (NCT03382223).

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.

Development of the Parental Experience with Care for Children with Serious Illnesses (PRECIOUS) quality of care measure.

BACKGROUND: Parent-reported experience measures are part of pediatric Quality of Care (QoC) assessments. However, existing measures were not developed for use across multiple healthcare settings or throughout the illness trajectory of seriously ill children. Formative work involving in-depth interviews with parents of children with serious illnesses generated 66 draft items describing key QoC processes. Our present aim is to develop a comprehensive parent-reported experience measure of QoC for children with serious illnesses and evaluate its content validity and feasibility. METHODS: For evaluating content validity, we conducted a three-round Delphi expert panel review with 24 multi-disciplinary experts. Next, we pre-tested the items and instructions with 12 parents via cognitive interviews to refine clarity and understandability. Finally, we pilot-tested the full measure with 30 parents using self-administered online surveys to finalize the structure and content. RESULTS: The Delphi expert panel review reached consensus on 68 items. Pre-testing with parents of seriously ill children led to consolidation of some items. Pilot-testing supported feasibility of the measure, resulting in a comprehensive measure comprising 56 process assessment items, categorized under ten subthemes and four themes: (1) Professional qualities of healthcare workers, (2) Supporting parent-caregivers, (3) Collaborative and holistic care, and (4) Efficient healthcare structures and standards. We named this measure the PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS). CONCLUSIONS: PRECIOUS is the first comprehensive measure and has the potential to standardize assessment of QoC for seriously ill children from parental perspectives. PRECIOUS allows for QoC process evaluation across contexts (such as geographic location or care setting), different healthcare workers, and over the illness trajectory for children suffering from a range of serious illnesses.

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.

Hand Grip Strength Predicts Mortality and Quality of Life in Heart Failure: Insights From the Singapore Cohort of Patients With Advanced Heart Failure.

BACKGROUND: Frailty is prevalent among patients with heart failure (HF) and is associated with increased mortality rates and worse patient-centered outcomes. Hand grip strength (GS) has been proposed as a single-item marker of frailty and a potential screening tool to identify patients most likely to benefit from therapies that target frailty so as to improve quality of life (QoL) and clinical outcomes. We assessed the association of longitudinal decline in GS with all-cause mortality and QoL. Decline in GS is associated with increased risk of all-cause mortality and worse overall and domain-specific (physical, functional, emotional, social) QoL among patients with advanced HF. METHODS: We used data from a prospective, observational cohort of patients with New York Heart Association class III or IV HF in Singapore. Patients' overall and domain-specific QoL were assessed, and GS was measured every 4 months. We constructed a Kaplan-Meier plot with GS at baseline dichotomized into categories of weak (≤ 5th percentile) and normal (> 5th percentile) based on the GS in a healthy Singapore population of the same sex and age. Missing GS measurements were imputed using chained equations. We jointly modeled longitudinal GS measurements and survival time, adjusting for comorbidities. We used mixed effects models to evaluate the associations between GS and QoL. RESULTS: Among 251 patients (mean age 66.5 ± 12.0 years; 28.3% female), all-cause mortality occurred in 58 (23.1%) patients over a mean follow-up duration of 3.0 ± 1.3 years. Patients with weak GS had decreased survival rates compared to those with normal GS (log-rank P = 0.033). In the joint model of longitudinal GS and survival time, a decrease of 1 unit in GS was associated with a 12% increase in rate of mortality (hazard ratio: 1.12; 95% confidence interval: 1.05-1.20; P = < 0.001). Higher GS was associated with higher overall QoL (ß (SE) = 0.36 (0.07); P = < 0.001) and higher domain-specific QoL, including physical (ß [SE] = 0.13 [0.03]; P = < 0.001), functional (ß [SE] = 0.12 [0.03]; P = < 0.001), and emotional QoL (ß [SE] = 0.08 [0.02]; P = < 0.001). Higher GS was associated with higher social QoL, but this was not statistically significant (ß [SE] = 0.04 [0.03]; P = 0.122). CONCLUSIONS: Among patients with advanced HF, longitudinal decline in GS was associated with worse survival rates and QoL. Further studies are needed to evaluate whether incorporating GS into patient selection for HF therapies leads to improved survival rates and patient-centered outcomes.

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.

Barriers to advance care planning among patients with advanced serious illnesses: A national survey of health-care professionals in Singapore.

OBJECTIVES: To assess the barriers that health-care professionals (HCPs) face in having advance care planning (ACP) conversations with patients suffering from advanced serious illnesses and to provide care consistent with patients' documented preferences. METHODS: We conducted a national survey of HCPs trained in facilitating ACP conversations in Singapore between June and July 2021. HCPs responded to hypothetical vignettes about a patient with an advanced serious illness and rated the importance of barriers (HCP-, patient-, and caregiver-related) in (i) conducting and documenting ACP conversations and (ii) providing care consistent with documented preferences. RESULTS: Nine hundred eleven HCPs trained in facilitating ACP conversations responded to the survey; 57% of them had not facilitated any in the last 1 year. HCP factors were reported as the topmost barriers to facilitating ACP. These included lack of allocated time to have ACP conversations and ACP facilitation being time-consuming. Patient's refusal to engage in ACP conversations and family experiencing difficulty in accepting patient's poor prognosis were the topmost patient- and caregiver-related factors. Non-physician HCPs were more likely than physicians to report being fearful of upsetting the patient/family and lack of confidence in facilitating ACP conversations. About 70% of the physicians perceived caregiver factors (surrogate wanting a different course of treatment and family caregivers being conflicted about patients' care) as barriers to providing care consistent with preferences. SIGNIFICANCE OF RESULTS: Study findings suggest that ACP conversations be simplified, ACP training framework be improved, awareness regarding ACP among patients, caregivers, and general public be increased, and ACP be made widely accessible.

Three distinct symptom profiles among older adults with severe dementia: A latent class analysis.

OBJECTIVES: Older adults with severe dementia experience multiple symptoms at the end of life. This study aimed to delineate distinct symptom profiles of older adults with severe dementia and to assess their association with older adults' and caregiver characteristics and 1-year mortality among older adults. METHODS: We used baseline data from a cohort of 215 primary informal caregivers of older adults with severe dementia in Singapore. We identified 10 indicators representing physical, emotional, and functional symptoms, and responsive behaviors, and conducted latent class analysis. We assessed the association between delineated older adults' symptom profiles and their use of potentially burdensome health-care interventions in the past 4 months; older adults' 1-year mortality; and caregiver outcomes. RESULTS: We delineated 3 profiles of older adults - primarily responsive behaviors (Class 1; 33%); physical and emotional symptoms with responsive behaviors (Class 2; 20%); and high functional deficits with loss of speech and eye contact (Class 3; 47%). Classes 2 and 3 older adults were more likely to have received a potentially burdensome intervention for symptoms in the past 4 months and have a greater hazard for 1-year mortality. Compared to Class 1, caregivers of Class 2 older adults were more likely to experience adverse caregiver outcomes, that is, higher distress, impact on schedule and health, anticipatory grief, and coping and lower satisfaction with care received (p<0.01 for all). SIGNIFICANCE OF RESULTS: The 3 delineated profiles of older adults can be used to plan or optimize care plans to effectively manage symptoms of older adults and improve their caregivers' outcomes.

Caregivers' Absenteeism and Its Association With Health Shocks and Functional Impairment Among Persons With Severe Dementia.

Adult child caregivers of persons with severe dementia (PWSDs) experience absenteeism due to caregiving. We quantified employed adult child caregivers' absenteeism; its association with PWSDs' functional impairment and health shocks; and characteristics of caregivers not experiencing absenteeism in the presence of PWSDs' health shocks and high functional impairment. We used a prospective cohort of 111 employed adult child caregivers of community-dwelling PWSDs in Singapore surveyed every 4 months for 1 year. We calculated absenteeism days due to caregiving and the corresponding absenteeism cost. Findings showed that 43% of the caregivers experienced absenteeism due to caregiving at least once during 1 year. On average, in a month, caregivers experienced 2.3 (SD = 5.9) absenteeism days and S$758 (SD = 2120) absenteeism cost. Those caring for PWSDs with high functional impairment experienced an additional 2.5 absenteeism days and S$788 absenteeism cost versus caregivers of PWSDs with low functional impairment. Caregivers whose PWSDs experienced a health shock experienced an additional 1.8 absenteeism days and S$772 absenteeism cost versus caregivers of PWSDs without a health shock. Co-residence with PWSDs worsened the impact of PSWDs' high functional impairment on caregivers absenteeism. Caregivers not co-residing with PWSDs and not using a maladaptive coping style were less likely to experience absenteeism when caring for PWSDs with a health shock. Results suggest a need to support caregivers of PWSDs to better cope with their caregiving in order to mitigate caregivers' absenteeism.

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.

The cost of caring: How advanced cancer patients affect Caregiver's employment in Singapore.

BACKGROUND: With ageing populations and rising cancer incidence, more people are becoming informal caregivers. Informal caregivers are less likely to work than non-caregivers, yet little is known about how their employment changes over time. This study aimed to examine the association between decline in cancer patient's health (termed health shock) and caregiver's employment. A secondary aim was to assess characteristics of caregivers who stayed employed despite the health shock and the burden of caring for advanced stage cancer patients. METHOD: This study used data from 270 dyads of advanced cancer patients and their caregivers who participated in the Cost of Medical Care of Patients with Advanced Serious Illness in Singapore study. The dyads were interviewed every 3 months for 2 years. Fixed-effects regression was used to analyse the association between patient health shock and two caregiver employment outcomes (i.e., employment status and work disruptions). RESULTS: Ninety-seven% of caregivers whose patient experienced a health shock reported work disruptions. About 13% of caregivers whose patient experienced at least one health shock left employment, compared to 5% of those whose patient did not experience any health shock. Following a patient health shock, caregivers were significantly less likely to be employed (ß: -0.03; 95% CI, -0.05 to -0.001) and more likely to experience work disruptions (ß: 0.06; 95% confidence interval [CI], -0.01 to 0.12). Caregivers who were young, educated, unmarried, not spousal caregivers, and not living with their patients were more likely to stay employed despite patient health shock (p < 0.01 for all). CONCLUSION: Findings show that caregivers' employment is affected by their patients' health through the caregiving trajectory. Continuous support for caregivers catered to specific vulnerable subgroups may be important to keeping caregivers in the workforce.

Longitudinal trajectories of caregiving experiences among primary informal caregivers of patients with metastatic solid cancer (stage IV).

OBJECTIVE: Cancer is a significant cause of mortality worldwide. The diagnosis of advanced cancer affects both patients and their family caregivers. Understanding the course of both negative and positive experiences of caregiving provides a more comprehensive understanding of the caregiving experience. The study aims to identify joint trajectories of burden and esteem among family caregivers of patients with solid metastatic cancer, and to identify caregiver characteristics that predict membership for each delineated trajectory. METHODS: A prospective longitudinal study of 346 informal family caregivers of patients with solid metastatic cancer were recruited between July 2016 and December 2019. Surveys were conducted every 3 months for 2 years. We assessed caregiver burden and positive aspects of caregiving using the modified Caregiver Reaction Assessment. We estimated the joint trajectories for these outcomes using group-based multi-trajectory modelling. RESULTS: We identified 4 trajectories describing caregivers with (1) low burden, moderate esteem (38.3%), (2) low burden, high esteem (20.3%), (3) high burden, low esteem (16.4%), (4) high burden, high esteem (24.9%). Compared to the 'low burden, high esteem' trajectory, male and non-spousal caregivers were more likely to experience high burden and esteem while caregivers from low socioeconomic status were more likely to belong to trajectories with a high burden. CONCLUSION: Recognising caregivers at high risk of belonging to trajectories with high burden or low esteem may enable healthcare professionals to anticipate and provide appropriate support to mitigate the impact of negative outcomes.

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.