A prospective study of psychological distress among patients with advanced cancer and their caregivers.

BACKGROUND: Cancer can impact the psychological well-being of both patients and their informal caregivers. We investigated the joint trajectories of psychological distress among Singaporean advanced cancer patients-caregiver dyads. We also examined predictors of trajectory group membership. METHODS: This study utilised data from 299 patients with advanced solid cancer and their caregivers over 33 months (12 times points). Group-based trajectory modelling was used to examine the joint trajectories of patient anxiety, patient depression, caregiver anxiety and caregiver depression scores using the Hospital Anxiety and Depression Scale. RESULTS: Four joint trajectory groups were found: (1) Patient-caregiver low distress (27%), (2) patient-caregiver increasing distress (28.5%), (3) patient low- caregiver borderline distress (25%), (4) patient-caregiver high distress (19.5%). Dyads where the patient is below 50 years of age were more likely to be in Group 4. Dyads where caregiver-patient emotional closeness was low were more likely to be in Groups 2 or 4 where dyads reported increasing/high distress. Dyads that reported financial inadequacy were more likely to be in Groups 2, 3 and 4, while dyads with caregivers who were employed were more likely to be in group 3. CONCLUSIONS: A substantial proportion of patients and caregivers reported anxiety and/or depression that lasted or increased throughout the study duration. We found significant heterogeneity in how dyads experienced psychological distress, suggesting that efforts should consider dyadic differences when providing psychological support. Particular focus should be placed on identifying dyads that are at risk and who require additional support.

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

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

Trajectories of Suffering in the Last Year of Life Among Patients With a Solid Metastatic Cancer.

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

Financial difficulties and patient-reported outcomes among patients with advanced heart failure.

PURPOSE: Management of congestive heart failure (CHF) is associated with high health care costs and financial difficulties for patients. We aimed to comprehensively assess the association between financial difficulties and patients' quality of life (QOL) (physical, emotional, social and spiritual), perceived health care quality, and perception of being a burden to the family among patients with CHF; and to assess whether perceived control over stress moderated these associations. METHODS: This was a cross-sectional study of 250 patients using the baseline data of the Singapore Cohort of Patients with Advanced Heart Failure (SCOPAH). Patients had class 3 or 4 CHF symptoms based on the New York Heart Association and were recruited between July 2017 and August 2019. We used a 3-item questionnaire to measure financial difficulties among patients. We used multivariable linear/ordered logistic regressions to test associations between financial difficulties and each dependent variable. RESULTS: 41% of participants reported financial difficulties. A higher financial difficulties score (range: 0-6, higher score indicating greater difficulty) was associated with lower QOL (emotional, social, and spiritual) and perceived health care coordination, and a higher likelihood of patients perceiving themselves to being a burden to family (all p < 0.05) CONCLUSION: Patients with financial difficulties are vulnerable to poor outcomes. Heart failure clinics should directly assess patients' financial difficulties to help guide treatment-related discussions and to identify patients vulnerable to poor QOL.

Process- and Outcome-Based Financial Incentives to Improve Self-Management and Glycemic Control in People with Type 2 Diabetes in Singapore: A Randomized Controlled Trial.

BACKGROUND: Sub-optimally controlled diabetes increases risks for adverse and costly complications. Self-management including glucose monitoring, medication adherence, and exercise are key for optimal glycemic control, yet, poor self-management remains common. OBJECTIVE: The main objective of the Trial to Incentivize Adherence for Diabetes (TRIAD) study was to determine the effectiveness of financial incentives in improving glycemic control among type 2 diabetes patients in Singapore, and to test whether process-based incentives tied to glucose monitoring, medication adherence, and physical activity are more effective than outcome-based incentives tied to achieving normal glucose readings. METHODS: TRIAD is a randomized, controlled, multi-center superiority trial. A total of 240 participants who had at least one recent glycated hemoglobin (HbA1c) being 8.0% or more and on oral diabetes medication were recruited from two polyclinics. They were block-randomized (blocking factor: current vs. new glucometer users) into the usual care plus (UC +) arm, process-based incentive arm, and outcome-based incentive arm in a 2:3:3 ratio. The primary outcome was the mean change in HbA1c at month 6 and was linearly regressed on binary variables indicating the intervention arms, baseline HbA1c levels, a binary variable indicating titration change, and other baseline characteristics. RESULTS: Our findings show that the combined incentive arms trended toward better HbA1c than UC + , but the difference is estimated with great uncertainty (difference - 0.31; 95% confidence interval [CI] - 0.67 to 0.06). Lending credibility to this result, the proportion of participants who reduced their HbA1c is higher in the combined incentive arms relative to UC + (0.18; 95% CI 0.04, 0.31). We found a small improvement in process- relative to outcome-based incentives, but this was again estimated with great uncertainty (difference - 0.05; 95% CI - 0.42 to 0.31). Consistent with this improvement, process-based incentives were more effective at improving weekly medication adherent days (0.64; 95% CI - 0.04 to 1.32), weekly physically active days (1.37; 95% CI 0.60-2.13), and quality of life (0.04; 95% CI 0.0-0.07) than outcome-based incentives. CONCLUSION: This study suggests that both incentive types may be part of a successful self-management strategy. Process-based incentives can improve adherence to intermediary outcomes, while outcome-based incentives focus on glycemic control and are simpler to administer.

Instability in Preference for Place of Death Among Patients With Symptoms of Advanced Heart Failure.

OBJECTIVES: Patient preference for place of death is an important component of advance care planning (ACP). If patients' preference for place of death changes over time, this questions the value of their documented preference. We aimed to assess the extent and correlates of change in preference for place of death over time among patients with symptoms of advanced heart failure. DESIGN: We conducted a secondary analysis of data from a randomized controlled trial of a formal ACP program vs usual care. SETTING AND PARTICIPANTS: We interviewed 282 patients aged 21 years old and above with heart failure and New York Heart Association Classification III and IV symptoms in Singapore. Analytic sample included 200 patients interviewed at least twice. METHODS: We assessed factors associated with patients' preference for place of death (home/institution/no preference) and change in their preference for place of death from previous time point (change toward home death/toward an institutional death/toward no preference/no change). These included patient demographics, quality of life (Kansas City Cardiomyopathy Questionnaire), and prognostic understanding. RESULTS: In our study, 66% of patients with heart failure changed their preference for place of death at least once during the study period with no consistent pattern of change. Correct prognostic understanding at the time of survey reduced the relative risk of change in preference for place of death to home (relative risk ratio 0.49, 95% confidence interval 0.32, 0.76), whereas a higher quality of life score was associated with a lower relative risk of patients changing their preferred place of death to an institution (relative risk ratio 0.99, 95% confidence interval 0.97, 1.00) relative to no change in preference. CONCLUSIONS AND IMPLICATIONS: We provide evidence of instability in patients with heart failure preference for place of death, which suggests that ACP documents should be regularly re-evaluated.

Role in decision making among congestive heart failure patients and its association with patient outcomes: a baseline analysis of the SCOPAH study.

OBJECTIVE: We investigated the predictors of patient-experienced and preferred roles for decision making, and the association between patient-experienced role in decision making and patient outcomes among congestive heart failure (HF) patients in a multi-ethnic Asian population. METHODS: We surveyed 246 HF patients classified as New York Heart Association class 3/4. Multivariable regressions were used to analyse the associations between patient-experienced roles and patient outcomes. RESULTS: Patients who were male, attained higher education, and had a higher cognitive score were more likely to experience and prefer active roles in decision making. Younger patients and patients with lower symptom burden were more likely, while married patients were less likely to prefer leading decision making. Patients with collaborative (family and/or physician) decision making reported higher emotional well-being and sense of meaning/peace. Collaborative and patient-led decision making were associated with higher perceived control over illness. Those who were led by others or made decisions alone reported lower quality of physician communication. CONCLUSION: Collaborative decision making was associated with higher emotional well-being, sense of meaning/peace, and higher perceived control over illness among HF patients. PRACTICE IMPLICATIONS: Physicians should explain the benefits of shared decision making and encourage patients to participate in treatment decisions.

Instability in End-of-Life Care Preference Among Heart Failure Patients: Secondary Analysis of a Randomized Controlled Trial in Singapore.

BACKGROUND: Efforts to improve quality of end-of-life (EOL) care are increasingly focused on eliciting patients' EOL preference through advance care planning (ACP). However, if patients' EOL preference changes over time and their ACP documents are not updated, these documents may no longer be valid at the time EOL decisions are made. OBJECTIVES: To assess extent and correlates of changes in stated preference for aggressive EOL care over time. DESIGN: Secondary analysis of data from a randomized controlled trial of a formal ACP program versus usual care in Singapore. PATIENTS: Two hundred eighty-two patients with heart failure (HF) and New York Heart Association Classification III and IV symptoms were recruited and interviewed every 4 months for up to 2 years to assess their preference for EOL care. Analytic sample included 200 patients interviewed at least twice. RESULTS: Nearly two thirds (64%) of patients changed their preferred type of EOL care at least once. Proportion of patients changing their stated preference for type of EOL care increased with time and the change was not unidirectional. Patients who understood their prognosis correctly were less likely to change their preference from non-aggressive to aggressive EOL care (OR 0.66, p value 0.07) or to prefer aggressive EOL care (OR 0.53; p value 0.001). On the other hand, patient-surrogate discussion of care preference was associated with a higher likelihood of change in patient preference from aggressive to non-aggressive EOL care (OR 1.83; p value 0.03). CONCLUSION: The study provides evidence of instability in HF patients' stated EOL care preference. This undermines the value of an ACP document recorded months before EOL decisions are made unless a strategy exists for easily updating this preference. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02299180.

Pilot Trial of a Combined Oncologist-Patient-Caregiver Communication Intervention in Singapore.

PURPOSE: High-quality end-of-life cancer care requires oncologists to communicate effectively and patients/caregivers to be participatory. However, most communication interventions target either but not both. We aimed to pilot a potentially disseminable combined oncologist-patient/caregiver intervention to improve oncologist empathic responses, discussions of prognosis and goals of care, and patient/caregiver participation. We assessed its feasibility, acceptability, and preliminary efficacy. METHODS: Between June 2018 and January 2019, we conducted a pilot 2-arm cluster trial in Singapore, randomly assigning 10 oncologists in a 1:1 ratio to receive the combined intervention or usual care. Intervention arm oncologists received online communication skills training, and their patients received a brief prompt sheet before consultations. We audio recorded consultations with 60 patients with stage IV solid malignancy and analyzed 30 in the postintervention phase. The study was not powered for statistical significance. RESULTS: Participation rates for oncologists and patients were 100% and 63%, respectively. All oncologists completed the online training within an average of 4.5 weeks; 73% of the patients selected at least 1 question in the prompt sheet. Compared with the control arm, intervention arm oncologists had more empathic responses in total (relative risk [RR], 1.66) and for every patient/caregiver negative emotion (RR, 2.01). Their consultations were more likely to involve discussions of prognosis (RR, 3.00) and goals of care, and their patients were more likely to ask a prognosis-related question (RR, 2.00; P > .05 for all). CONCLUSION: The combined oncologist-patient/caregiver intervention is feasible and acceptable and has the potential to improve communication within consultations.

Using Adherence-Contingent Rebates on Chronic Disease Treatment Costs to Promote Medication Adherence: Results from a Randomized Controlled Trial.

BACKGROUND: Poor adherence to medications is a global public health concern with substantial health and cost implications, especially for chronic conditions. In the USA, poor adherence is estimated to cause 125,000 deaths and cost $US100 billion annually. The most successful adherence-promoting strategies that have been identified so far have moderate effect, are relatively costly, and raise availability, feasibility, and/or scalability issues. OBJECTIVE: The main objective of SIGMA (Study on Incentives for Glaucoma Medication Adherence) was to measure the effectiveness on medication adherence of a novel incentive strategy based on behavioral economics that we refer to as adherence-contingent rebates. These rebates offered patients a near-term benefit while leveraging loss aversion and regret and increasing the salience of adherence. METHODS: SIGMA is a 6-month randomized, controlled, open-label, single-center superiority trial with two parallel arms. A total of 100 non-adherent glaucoma patients from the Singapore National Eye Centre were randomized into intervention (adherence-contingent rebates) and usual care (no rebates) arms in a 1:1 ratio. The primary outcome was the mean change from baseline in percentage of adherent days at Month 6. The trial registration number is NCT02271269 and a detailed study protocol has been published elsewhere. FINDINGS: We found that participants who were offered adherence-contingent rebates were adherent to all their medications on 73.1% of the days after 6 months, which is 12.2 percentage points (p = 0.027) higher than in those not receiving the rebates after controlling for baseline differences. This better behavioral outcome was achieved by rebates averaging 8.07 Singapore dollars ($US5.94 as of 2 November 2017) per month during the intervention period. CONCLUSION: This study shows that simultaneously leveraging several insights from behavioral economics can significantly improve medication adherence rates. The relatively low cost of the rebates and significant health and cost implications of medication non-adherence suggest that this strategy has the potential to cost-effectively improve health outcomes for many conditions.