Caregiving Experiences as Mediators Between Caregiving Stressors and Anticipatory Grief in Severe Dementia: Findings From Longitudinal Path Analysis.

OBJECTIVES: Family caregivers of older adults with severe dementia often experience anticipatory grief. We aimed to investigate the temporal association of caregiving stressors (older adults' behavioral symptoms, and caregiver-older adult co-residence and emotional closeness) and caregivers' anticipatory grief, and its mediation by positive and negative caregiving experiences. DESIGN: Prospective cohort. SETTING: Singapore. PARTICIPANTS: About 169 family caregivers of older adults with severe dementia were surveyed every 4 months for 4 years (up to 13 surveys). MEASUREMENTS: We measured anticipatory grief using the Marwit Meuser Caregiver Grief Inventory-Short Form, negative caregiving experiences using the Caregiver Reaction Assessment scale, positive caregiving experiences using Gain in Alzheimer Care Instrument and behavioral symptoms using the Cohen-Mansfield Agitation Inventory. We implemented a cross-lagged panel model to test mediation, a form of longitudinal path analysis. RESULTS: About 35% of the caregivers reported high anticipatory grief at least once during the study period. Older adults' behavioral symptoms had a significant direct effect (Standardized coefficient [95% confidence interval]: 0.12 [0.04, 0.21]) on caregivers' anticipatory grief. Negative experiences mediated the significant indirect effect of older adults' behavioral symptoms (0.16 [0.06, 0.25]) and coresidence (0.16 [0.07, 0.25]) on caregivers' anticipatory grief. Positive caregiving experiences did not mediate any path. CONCLUSIONS: Findings indicate a temporal association between caregiving stressors and anticipatory grief, mediated by negative caregiving experiences. Routine screening for anticipatory grief, and interventions to address caregiver stressors and negative caregiving experiences may alleviate caregivers' grief.

Opioid Access among Advanced Cancer Patients in Low- and Middle-Income Countries in Asia.

CONTEXT: Most cancer-associated pain is experienced in low- and middle-income countries (LMICs) due to inequitable access to opioids. OBJECTIVE: To determine opioid access as estimated by both patients and providers and to understand patient and facility-level factors influencing access among patients with advanced cancer in LMICs in Asia using the Behavioral Model of Health Services Use. METHODS: The APPROACH cross-sectional study was conducted in seven LMICs in Asia, involving in-depth surveys with providers and advanced cancer patients. A hierarchical logistic regression model was used to assess predisposing (i.e. individual factors), enabling (i.e. health care system and facility-level resources) and need (i.e. pain severity) factors predicting opioid access. RESULTS: Among patient participants (n=1,933), approximately 40% reported opioid use. Meanwhile 80% of facilities, as reported by providers, indicated at least half of their advanced cancer patients receive oral morphine prescriptions. Predisposing characteristics factored in the least in the model, with patient education positively associated with access (Odds ratio (OR): 1.01; 95% CI=1.00, 1.03). Facility-level enabling resources, factoring the most, included oral morphine prescription duration >14 days (OR: 1.27; 95% CI=1.05, 1.53) and the extent of physician palliative care training (extensive (>160 hours) OR: 3.95; CI=3.19, 4.88; basic (up to 40 hours) OR: 1.03; CI=1.03, 1.04). Patient need as indicated by greater pain severity predicted access (OR: 1.55; CI=1.47, 1.64). CONCLUSION: Study findings emphasize the importance of palliative care training-even a minimal amount-in supporting access to opioids for advanced cancer patients. This study also highlights pragmatic site-level policies, such as extended morphine prescription durations, enabling access.

Caregiver coping mediates the relationship between caregivers' understanding of dementia as terminal and their distress.

We assessed which coping strategies (problem-focused, emotion-focused, dysfunctional) mediate the association between caregivers' understanding of dementia as terminal and their distress. A total of 215 caregivers of community-dwelling persons with severe dementia were surveyed every 4 months over 3 years. A generalized structural equation model was used to test mediation. Caregivers who correctly understood dementia as terminal and those unsure (vs incorrect), experienced more distress (correct: ß [95% confidence interval (CI)]: 0.80 [0.00 to 1.60]; unsure: 0.95 [0.04 to 1.87]). Caregivers with correct understanding of dementia as terminal (vs incorrect) employed more dysfunctional (2.01 [0.60 to 3.42]) and problem-focused coping strategies (2.56 [0.08 to 5.05]). Although dysfunctional and problem-focused coping (associated with higher distress) mediated the positive association between caregivers' understanding that dementia is terminal and their distress, emotion-focused coping (associated with lower distress) did not offset this relationship. Results suggest that terminal illness disclosure to caregivers should be accompanied by interventions to promote emotion-focused coping strategies. Highlights Caregivers who understood dementia as terminal experienced more distress. Dysfunctional and problem-focused coping mediated the positive relationship between terminal illness understanding and caregiver distress. Emotion-focused coping did not offset this relationship.

Prognostic understanding among advanced heart failure patients and their caregivers: A longitudinal dyadic study.

OBJECTIVES: To examine heart failure patients' and caregivers' prognostic understanding (PU) over time, and patient and caregiver factors associated with their own and each other's PU. METHODS: We used longitudinal dyadic data from Singapore, involving surveys with 95 heart failure patient-caregiver dyads every 4 months for up to 4 years. We assessed the association of PU with patient health status, caregiver psychological distress and caregiving hours using random effects multinomial logistic models, controlling for patient and caregiver characteristics. RESULTS: At baseline, half of patients and caregivers reported correct PU. Patient and caregiver variables were associated with their own and each other's PU. Patients with poorer functional well-being were less likely to report correct PU [Average Marginal Effects (95 % CI) 0.008 (0.002, 0.015)] versus incorrect PU. Greater caregiver psychological distress was associated with a lower likelihood of caregivers reporting a correct PU [- 0.008 (-0.014, -0.002)]. Higher caregiving hours reduced the likelihood of patients reporting correct [- 0.002 (-0.003, -0.001)] and increased the likelihood of patients reporting uncertain [0.001 (0, 0.002)] PU. CONCLUSIONS: We found PU among patients and caregivers was influenced by their own and each other's experience. Our findings highlight the importance of ongoing communication to enhance PU of patients and caregivers.

More competent informal caregivers reduce advanced cancer patients' unplanned healthcare use and costs.

BACKGROUND: Patients with metastatic cancer experience high healthcare use and costs, most of which are unplanned. We aimed to assess whether patients with more competent informal caregivers have lower unplanned healthcare use and costs. METHODS: This study used data from a prospective cohort of patients with solid metastatic cancer. Patients and their informal family caregivers were surveyed every 3 months until patients' death. Patients' unplanned healthcare use/costs were examined through hospital records. Caregivers responded to the 4-item Caregiver Competence Scale. First, in a deceased subsample of patients and their caregivers, we used patients' last 2 years of data (226 dyads) to assess the association between caregivers' competency (independent variable) and patients' unplanned healthcare use/costs (outcomes). Next, in a prospective sample of patient-caregiver dyads (up to 15 surveys), we assessed whether patients' functional well-being and psychological distress moderated the association between caregivers' competency and unplanned healthcare use/costs (311 dyads). RESULTS: In the deceased subsample, during last 2 years of patients' life, caregivers' higher competency lowered the odds of patients' unplanned healthcare use [OR (CI) = 0.86 (0.75, 0.98), p = 0.03], and was associated with a significant reduction in unplanned healthcare costs [Coeff (CI) = -0.19 (-0.36, -0.01), p = 0.03]. In the prospective sample, patients' functional well-being and psychological distress moderated the association between caregivers' competency and patients' unplanned healthcare use/costs. CONCLUSION: With deterioration in patients' condition and an increase in caregiving demands, improving caregivers' competency can reduce patients' unplanned healthcare use and costs. This should be further tested in future trials.

'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.

Do advanced cancer patients and their caregivers agree on preferred place of patient's death?-a prospective cohort study of patient-caregiver dyads.

BACKGROUND: Greater patient-caregiver concordance for preferred place of death can increase the chances of patients dying at their preferred place, thus improving quality of life at end-of-life (EOL). We aimed to assess changes in and predictors of patient-caregiver concordance in preference for home death at EOL during the last 3 years of life of patients with advanced cancer. METHODS: We used data from the Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS) cohort study of patients with stage IV solid cancer. We interviewed patients and their caregivers every 4 months to assess their preference for home death (for patient), and patient (symptom burden, inpatient usage, financial difficulties) and caregiver (psychosocial distress, spiritual wellbeing, competency and perceived lack of family support) characteristics. We used data from patients' last 3 years of life. We used multivariable multinomial logistic regressions to predict dyad concordance for preference for home death. RESULTS: A total of 227 patient-caregiver dyads were analyzed. More than half of the patient-caregiver dyads observations were concordant in their preference for home death (54%). Concordance for home death declined closer to death (from 68% to 44%). Concordant dyads who preferred home death were less likely to include older patients [relative risk ratio, 0.97; P=0.03]. Dyads who preferred a non-home death (hospital, hospice, nursing home, unsure or others) were more likely to include patients with greater symptom burden (1.08; P=0.007) and with spousal caregivers (2.59; P=0.050), and less likely to include caregivers with greater psychosocial distress (0.90; P=0.003) and higher spiritual wellbeing (0.92; P=0.007). CONCLUSIONS: This study provides evidence of the dynamic changes in preference for home death among patient-caregiver dyads during last 3 years of patients' life. Understanding the EOL needs of older patients, optimizing home-based symptom control and better caregiver support are recommended to increase likelihood of dyad concordance for home death.

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.

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.

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.

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.

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.

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.

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.

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).

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.

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.

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.

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.

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.