Caregivers' Burden and Anticipatory Grief Increases Acute Health Care Use in Older Adults With Severe Dementia.

OBJECTIVES: To assess the bidirectional association of caregivers' burden and anticipatory grief with acute health care use (inpatient or emergency admission) among older adults with severe dementia. DESIGN: Prospective cohort. SETTING AND PARTICIPANTS: A total of 215 family caregivers of older adults with severe dementia in Singapore were surveyed every 4 months for 3 years (up to 10 surveys). We measured caregiver burden using the Caregiver Reaction Assessment scale and anticipatory grief using the Marwit Meuser Caregiver Grief Inventory-Short Form. METHODS: Using separate multivariable mixed-effects logistic regressions, controlling for relevant confounders, we assessed the association of caregiver burden and anticipatory grief (independent variables measured at time t) with older adults' acute health care use in the next 4 months (outcome measured at time t + 1). We also performed separate multivariable mixed-effects linear regressions to assess the association of older adults' acute health care use in the past 4 months (independent variable measured at time t) with caregiver burden and anticipatory grief (outcomes measured at time t). RESULTS: At baseline, 33% of the older adults had an inpatient or emergency admission in the past 4 months. Regression results showed that higher caregiver burden (odds ratio [OR], 1.58; 95% CI, 1.15-2.16) and anticipatory grief (OR, 1.02; 95% CI, 1.00-1.04) significantly increased the likelihood of older adults experiencing acute health care use in the next 4 months. However, older adults' acute health care use in the past 4 months did not significantly change their caregivers' burden or anticipatory grief. CONCLUSIONS AND IMPLICATIONS: Higher caregiver burden and anticipatory grief increase the likelihood of older adults having acute health care use. Addressing caregivers' well-being has implications for reducing acute health care use in older adults and the economic burden of severe dementia.

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.

Goals of Care Among Patients With Advanced Cancer and Their Family Caregivers in the Last Years of Life.

Importance: Understanding goals of care for terminally ill patients at the end of life is crucial to ensure that patients receive care consistent with their preferences. Objectives: To investigate the patterns of goals of care among patient-caregiver dyads over the last years of the patient's life and the associations of the goals of care with patient-caregiver characteristics. Design, Setting, and Participants: This prospective cohort study of 210 patient-caregiver dyads involved surveys every 3 months from July 8, 2016, until the patient's death or February 28, 2022. Data from the last 2 years of the patients' lives were analyzed. Dyads, which comprised patients with stage IV solid cancer and their caregivers, were recruited from outpatient clinics at 2 major cancer centers in Singapore. Main Outcomes and Measures: Goals of care were examined via the tradeoffs between life extension and symptom management and between life extension and cost containment. The actor-partner interdependence framework was implemented using mixed-effects linear regressions. Results: This study included 210 dyads (patients: mean [SD] age, 62.6 [10.5] years; 108 men [51.4%]; caregivers: mean [SD] age, 49.4 [14.6] years; 132 women [62.9%]). On average, 34% of patients (264 of 780 observations; range, 23%-42%) and 29% of caregivers (225 of 780 observations; range, 20%-43%) prioritized symptom management over life extension, whereas 24% of patients (190 of 780 observations; range, 18%-32%) and 19% of caregivers (148 of 780 observations; range, 8%-26%) prioritized life extension. Between cost containment and life extension, on average, 28% of patients (220 of 777 observations; range, 22%-38%) and 17% of caregivers (137 of 780 observations; range, 10%-25%) prioritized cost containment, whereas 26% of patients (199 of 777 observations; range, 18%-34%) and 35% of caregivers (271 of 780 observations; range, 25%-45%) prioritized life extension. Goals of care did not change as patients approached death. Patients prioritized symptom management if they experienced higher symptom burden (average marginal effect [SE], 0.04 [0.01]), worse spiritual well-being (average marginal effect [SE], -0.04 [0.01]), and accurate (vs inaccurate) prognostic awareness (average marginal effect [SE], 0.40 [0.18]) and if their caregivers reported accurate prognostic awareness (average marginal effect [SE], 0.53 [0.18]), lower impact of caregiving on finances (average marginal effect [SE], -0.28 [0.08]), and poorer caregiving self-esteem (average marginal effect [SE], -0.48 [0.16]). Compared with patients, caregivers expressed lower preferences for cost containment (average marginal effect [SE], -0.63 [0.09]). Patients prioritized cost containment if they were older (average marginal effect [SE], 0.03 [0.01]), had higher symptom burden (average marginal effect [SE], 0.04 [0.01]), had poorer spiritual well-being (average marginal effect [SE], -0.04 [0.01]), and their caregivers reported poorer caregiving self-esteem (average marginal effect [SE], -0.51 [0.16]) and more family support (average marginal effect [SE], -0.30 [0.14]). Conclusions and Relevance: In this cohort study of patient-caregiver dyads, findings suggested the importance of interventions aimed at reducing discordance in goals of care between patients and caregivers and helping them develop realistic expectations to avoid costly, futile treatments.

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.

Caregiver-reported use of physical restraints among community-dwelling older adults with severe dementia in Singapore.

BACKGROUND: Older adults with severe dementia are at increased risk of being physically restrained in nursing homes and acute care settings, but little is known about restraint use among those cared for at home. This study explores caregiver-reported use of restraints among community-dwelling older adults with severe dementia. METHODS: Using cross-sectional data from 215 family caregivers, we describe restraint use among older adults with severe dementia living at home. We then use multivariable logistic regression to identify factors associated with restraint use. RESULTS: Nearly half (47%) of caregivers reported on older adults who had been subject to restraints. Most caregivers reporting restraint use suggested safety reasons, such as prevention of falls (68%), wandering (30%), and removal of catheters or feeding tubes (29%); and 44% indicated doctors or other health care providers were involved in the decision to restrain. Feeding tubes (OR = 4.16, 95% CI: 1.27-13.59) and physically aggressive agitation behaviors (OR = 1.93, 95% CI: 1.09-3.40) were associated with higher odds of restraint use among older adults with severe dementia. Caregivers who received strong emotional support from friends (OR = 0.45, 95% CI: 0.21-0.95) were less likely to report restraint use while serving as a caregiver to others (OR = 2.77, 95% CI: 1.36-5.63) increased the odds of restraint use. CONCLUSIONS: The pervasiveness of restraint use is concerning and suggests a lack of evidence-based guidance and support for both caregivers and healthcare providers to prevent restraint use among older adults with severe dementia cared for at home.

Why is end-of-life inpatient cost high among cancer patients? A prospective cohort study.

BACKGROUND: Inpatient cost for cancer patients is high during the last year of life, but reasons for this are not understood. We aim to understand the type of hospital admissions and inpatient services associated with an increase in inpatient cost in last year of life. METHODS: We used survey and billing records of 439 deceased patients with a solid metastatic cancer, enrolled in a prospective cohort study. Based on cost per day of inpatient admissions, we classified admissions as low- or high-intensity. We decomposed the inpatient cost into cost for different inpatient services. We examined the inpatient cost in the last year of life. We also assessed patient characteristics associated with higher inpatient cost in the next 3 months. RESULTS: Towards death, proportion of inpatient cost for "maintenance care" increased while that for intensive care unit (ICU) and surgeries decreased. Low-intensity, compared to high-intensity admissions had a higher proportion of cost for "maintenance care" and a lower proportion for surgeries and ICU. Number of low-intensity admissions increased more steeply towards death than high-intensity admissions. Both admission types contributed equally to the share of inpatient cost. Older patients were less likely to have a high-intensity admission (ß:-0.01, CI: -0.02, 0.00). Greater preference for life extension (ß: 0.06, CI: 0.01, 0.11) and inaccurate prognostic belief were associated with higher cost of high-intensity admissions (ß: 0.32, CI: 0.03, 0.62). CONCLUSIONS: Findings suggest that inpatient costs in last year of life may be reduced if maintenance care is availed in low-cost settings such as hospice/palliative care alongside steps to reduce non-beneficial surgeries and ICU admissions.

PRECIOUS demonstrated satisfactory measurement properties for assessing the quality of care for children with serious illnesses.

OBJECTIVES: To determine the measurement properties of PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS), a parent-reported measure of Quality of Care for seriously ill children across care settings and illness trajectories. STUDY DESIGN AND SETTING: Parents self-administered baseline and 2-week follow-up surveys online. Exploratory Factor Analysis was used to determine PRECIOUS's factor structure and select items. Internal consistency was evaluated with Cronbach's α, test-retest reliability with intraclass correlation coefficients, and convergent validity with Spearman's correlations between PRECIOUS scales and subscales of Measure of Processes of Care and Quality of Children's Palliative Care Instrument. RESULTS: Of 152 parents [108 (71%) mothers, 44 (29%) fathers] who completed the baseline survey, 123 (81%) completed follow-up. Exploratory Factor Analysis grouped PRECIOUS into five scales: collaborative and goal-concordant care (12 items), caregiver support and respectful care (15 items), access to financial and medical resources (five items), reducing caregiving stressors (nine items), and hospitalization-specific processes (four items). Root Mean Square Error of Approximation was 0.040 and Comparative Fit Index was 0.980. Cronbach's α ranged from 0.85 to 0.96. Intraclass correlation coefficients ranged from 0.72 to 0.86. Significant correlations with Measure of Processes of Care and Quality of Children's Palliative Care Instrument confirmed convergent validity. The original 56-item tool was reduced to 45 items. CONCLUSION: PRECIOUS demonstrates satisfactory measurement properties for assessing Quality of Care for seriously ill children.

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).

Multifactorial risk factors for hospital readmissions among patients with symptoms of advanced heart failure.

AIMS: Economic burden of heart failure is attributed to hospital readmissions. Previous studies assessing risk factors for readmissions have focused on single group of risk factors, were limited to 30-day readmissions, or did not account for competing risk of mortality. This study investigates the biological, socio-economic, and behavioural risk factors predicting hospital readmissions while accounting for the competing risk of mortality. METHODS AND RESULTS: In this prospective cohort study, we recruited 250 patients hospitalized with symptoms of advanced heart failure [New York Heart Association (NYHA) Class III and IV] between July 2017 and April 2019. We analysed their baseline survey data and their hospitalization records over the next 4.5 years (July 2017 to January 2022). We used a joint-frailty model to determine the multifactorial risk factors for all-cause and unplanned hospital readmissions and mortality. At the time of recruitment, patients' mean (SD) age was 66 (12) years, majority being male (72%) and NYHA class IV (68%) with reduced ejection fraction (72%). 87% of the patients had poor self-care behaviours, 51% had diabetes and 56% had weak grip strength. Within 2 years of a hospital admission, 74% of the patients had at least one readmission. Among all readmissions during follow-up, 68% were unplanned. Results from the multivariable regression analysis shows that the independent risk factors for hospital readmissions were biologic-weak grip strength [hazard ratio (95% CI): 1.59 (1.06, 2.13)], poor functional status [1.79 (0.98, 2.61)], diabetes [1.42 (0.97, 1.86)]; behavioural-poor self-care [1.66 (0.84, 2.49)], and socio-economic-preference for maximal life extension at high cost for those with high education [1.98 (1.17, 2.80)]. Risk factors for unplanned hospital readmissions were similar. A higher hospital readmission rate increased the risk of mortality [1.86 (1.23, 2.50)]. Other risk factors for mortality were biologic-weak grip strength [3.65 (0.57, 6.73)], diabetes [2.52 (0.62, 4.42)], socio-economic-lower education [2.45 (0.37, 4.53)], and being married [2.53 (0.37, 4.69)]. Having a private health insurance [0.40 (0.08, 0.73)] lowered the risk for mortality. CONCLUSIONS: Risk factors for hospital readmissions and mortality are multifactorial. Many of these factors, such as weak grip strength, diabetes, poor self-care behaviours, are potentially modifiable and should be routinely assessed and managed in cardiac clinics and hospital admissions.

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.

Weak grip strength predicts higher unplanned healthcare utilization among patients with heart failure.

AIMS: Frailty increases healthcare utilization and costs for patients with heart failure but is challenging to assess in clinical settings. Hand grip strength (GS) is a single-item measure of frailty yet lacks evidence as a potential screening tool to identify patients at risk of higher unplanned events and related healthcare costs. We examined the association of baseline and longitudinal GS measurements with healthcare utilization and costs among patients with advanced heart failure. METHODS AND RESULTS: Between July 2017 and April 2019, we enrolled 251 patients with symptoms of advanced heart failure (New York Heart Association class III or IV) in a prospective cohort study in Singapore. We measured GS at baseline and every 4 months for 2 years and linked patients' survey data with their medical and billing records. We categorized patients as having weak GS if their GS measurement was below the 5th percentile of the age- and gender-specific normative GS values in Singapore. We assessed the association between baseline GS and healthcare utilization (unplanned and planned events and healthcare costs, total costs, and length of inpatient stay) over the next 2 years using regression models. We investigated the association between longitudinal 4-monthly GS assessments and the ensuing 4 months of healthcare utilization and costs using mixed-effects logistic and two-part regression models. At baseline, 22.5% of patients had weak GS. Baseline and longitudinal GS measurements were significantly associated with longer length of inpatient stay, greater likelihood of unplanned events, and higher related costs. Patients with weak GS had higher odds of an unplanned event occurring by 8 percentage points [95% confidence interval (CI) (0.01, 0.14), P = 0.026], incurred longer inpatient stays by 4 days [95% CI (1.97, 6.79), P = 0.003], and additional SG$ 4792 [US$ ~ 3594, 95% CI (1894, 7689), P = 0.014] in unplanned healthcare costs over the next 4 months. CONCLUSIONS: GS is a simple tool to identify and monitor heart failure patients at risk of unplanned events, longer inpatient stays, and higher related healthcare costs. Findings support its routine use in clinical settings.

Cancer patients' awareness of extent of disease: anxiety, depression, quality of life.

OBJECTIVE: In Asian cultures, the belief that full disclosure would harm the patient's health would lead to non-disclosure. The study aimed to determine whether making patients aware of the extent of their disease will lead to psychological morbidity and poor quality of life (QOL). METHODS: This was a cross-sectional study among 195 patients with stage 4 cancer who were aware of their cancer diagnosis at the medical oncology, radiation oncology and palliative care units at an academic cancer centre. Participants were asked about their cancer stage, treatment goal and if they prefer to know their life expectancy. They answered the 14-item Hospital Anxiety and Depression Scale and 27-item validated Functional Assessment of Cancer Therapy-General questionnaires. Determination of the association of patients' awareness of the extent of the disease with psychological status and QOL was analysed using univariate and multivariate statistics. RESULTS: About three-fourths of patients with cancer knew they had an advanced disease, but very few were aware that the current treatments they were taking for their cancer would not cure them. No association between awareness of the extent of the disease and psychological morbidity was found. Still, those aware of the advanced disease had significantly higher QOL scores for social well-being. CONCLUSIONS: This study revealed that physicians should not hesitate to communicate the cancer diagnosis and prognosis to patients, as the disclosure was not associated with psychological morbidity. Open communication between physicians, patients and their families on the extent of the disease could empower patients to make informed decisions about their treatment, engage in advance care planning and seek the necessary support.

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.

A Prospective Cohort Study of Medical Decision-Making Roles and Their Associations with Patient Characteristics and Patient-Reported Outcomes among Patients with Heart Failure.

OBJECTIVE: Among patients with heart failure (HF), we examined 1) the evolution of patient involvement in decision making over 2 y, 2) the association of patient characteristics with decision-making roles, and 3) the association of decision-making roles with distress, spiritual well-being, and quality of physician communication. METHODS: We administered the survey every 4 mo over 24 mo to patients with New York Heart Association class 3/4 symptoms recruited from inpatient clinics. The decision-making roles were categorized as no patient involvement, physician/family-led, joint (with family and/or physicians), patient-led, or patient-alone decision making. The associations between patient characteristics and decision-making roles were assessed using a mixed-effects ordered logistic regression, whereas those between patient outcomes and decision-making roles were investigated using mixed-effects linear regressions. RESULTS: Of the 557 patients invited, 251 participated in the study. The most common roles in decision making at baseline assessment were "no involvement" (27.53%) and "patient-alone decision making" (25.10%). The proportions of different decision-making roles did not change over 2 y (P = 0.37). Older age (odds ratio [OR] = 0.97; P = 0.003) and being married (OR = 0.63; P = 0.035) were associated with lower involvement in decision making. Chinese ethnicity (OR = 1.91; P = 0.003), higher education (OR = 1.87; P = 0.003), awareness of terminal condition (OR = 2.00; P < 0.001), and adequate self-care confidence (OR = 1.74; P < 0.001) were associated with greater involvement. Compared with no patient involvement, joint (ß = -0.58; P = 0.026) and patient-led (ß = -0.59; P = 0.014) decision making were associated with lower distress, while family/physician-led (ß = 4.37; P = 0.001), joint (ß = 3.86; P < 0.001), patient-led (ß = 3.46; P < 0.001), and patient-alone (ß = 3.99; P < 0.001) decision making were associated with better spiritual well-being. CONCLUSION: A substantial proportion of patients was not involved in decision making. Patients should be encouraged to participate in decision making since it is associated with lower distress and better spiritual well-being. HIGHLIGHTS: The level of involvement in medical decision making did not change over time among patients with heart failure. A substantial proportion of patients were not involved in decision making throughout the 24-mo study period.Patients' involvement in decision making varied by age, ethnicity, education level, marital status, awareness of the terminal condition, and confidence in self-care.Compared with no patient involvement in decision making, joint and patient-led decision making were associated with lower distress, and any level of patient involvement in decision making was associated with better spiritual well-being.

Instability in Caregivers' Perception of Dementia as a Terminal Disease.

OBJECTIVES: Family caregivers' perception that dementia is a terminal disease influence end-of-life (EoL) care of persons with severe dementia (PwSDs). Yet, this perception and the extent to which it changes over time is underexplored. We assessed PwSD caregivers' perception of dementia as a terminal disease and changes in this perception over time. DESIGN: Prospective cohort. SETTING AND PARTICIPANTS: Two hundred fifteen primary informal caregivers of community-dwelling PWSDs in Singapore were surveyed every 4 months over a period of 16 months. METHODS: We assessed the proportion of caregivers who perceived that dementia is a terminal disease and the extent to which it changed between the previous time points. Using mixed effects multinomial regression models, we assessed factors associated with caregivers' perception and changes in perception between consecutive time points. RESULTS: At baseline, only 26% of the caregivers reported correctly that dementia is a terminal disease. This changed over time, not necessarily toward a correct perception. Caregivers of PwSDs with an acute medical condition in the last 4 months (risk ratio [RR] 2.19, 95% CI 1.21, 3.97) and those with higher functional dependence (RR 1.11, 95% CI 1.01,1.22) were more likely and those of older PwSDs were less likely (RR 0.87, 95% CI 0.81, 0.93) to perceive dementia as a terminal disease. Caregivers of PwSDs who had experienced an acute medical problem in the last 4 months (RR 1.58, 95% CI 1.00, 2.49) were also more likely to shift their perception toward being correct. Caregivers of PwSDs who had more agitation behaviors were more likely to shift their perception toward being incorrect (RR 1.04, 95% CI 1.00,1.07) CONCLUSIONS AND IMPLICATIONS: Few caregivers perceived dementia as terminal, and this perception changed over time and differed according to age and the health status of PwSD. Results have implications regarding the frequency of prognostic discussions.

The relationship between hope, medical expenditure and survival among advanced cancer patients.

Introduction: Among those with advanced illness, higher levels of hope may offer physiological benefits. Yet, greater levels of hope may also encourage aggressive treatments. Therefore, higher levels of hope may lead to greater healthcare utilization, higher expenditure, and longer survival. We test these hypotheses among patients with advanced cancer. Methods: A secondary data analysis from a cross-sectional survey of 195 advanced cancer patients with high mortality risk linked to subsequent healthcare utilization (outpatient, day surgeries, non-emergency admissions), health expenditures, and death records. The survey collected data on hope, measured generally by the Herth Hope Index (HHI) and more narrowly by two questions on illness-related hope. Generalized linear regression and Cox models were used to test our hypotheses. Results: 142 (78%) survey participants died during the period of analysis, with close to half (46%) doing so within a year of the survey. Contrary to expectation, HHI scores did not have a significant association with healthcare utilization, expenditure or survival. Yet, illness-related hope, defined as those who expected to live at least 2 years, as opposed to the likely prognosis of 1 year or less as determined by the primary treating oncologist, had 6.6 more planned hospital encounters (95% CI 0.90 to 12.30) in the 12-months following the survey and 41% lower mortality risk (hazard ratio: 0.59, 95% CI 0.36 to 0.99) compared to those who were less optimistic. Secondary analysis among decedents showed that patients who believed that the primary intent of their treatment is curative, had higher total expenditure (S$30,712; 95% CI S$3,143 to S$58,282) in the last 12 months of life than those who did not have this belief. Conclusion: We find no evidence of a relationship between a general measure of hope and healthcare utilization, expenditure, or survival among advanced cancer patients. However, greater illness-related hope is positively associated with these outcomes.

Caregivers' End-of-Life Care Goals for Persons with Severe Dementia Change Over Time.

BACKGROUND: Family caregivers make end-of-life (EOL) decisions for persons with severe dementia (PWSDs). It is not known whether the family caregivers' goals change over time. OBJECTIVE: Assess caregivers' EOL care goal for PWSDs and change in these goals over time. METHODS: Using a prospective cohort of 215 caregivers of PWSDs, we assessed the proportion of caregivers whose EOL care goal for PWSDs changed between two consecutive time points. Mixed effects multinomial regression models assessed factors associated with caregivers' EOL care goals for PWSD (maximal, moderate, minimal life extension); and change in EOL care goal from previous time point. RESULTS: At baseline, 20% of the caregivers had a goal of maximal life extension for their PWSD, and 59% changed their EOL care goal at least once over a period of 16 months. Caregivers of PWSDs with lower quality of life (RR: 1.15, CI: 1.06, 1.24), who expected shorter life expectancy for PWSDs (RR: 10.34, CI: 2.14, 49.99) and who had an advance care planning discussion (RR: 3.52, CI: 1.11, 11.18) were more likely to have a goal of minimal life extension for PWSD. Caregivers with higher anticipatory grief (RR: 0.96, CI: 0.93,1) were more likely to have a goal of maximal life extension. Change in PWSDs' quality of life and change in caregivers' anticipatory grief were associated with change in caregivers' EOL care goals. CONCLUSION: Caregivers' EOL care goals for PWSDs change over time with change in PWSD and caregiver related factors. Findings have implications regarding how health care providers can engage with caregivers.