Prognostic awareness and prognostic information preferences among advanced cancer patients in Kenya.

BACKGROUND:  Cancer is the third leading cause of death in Kenya. Yet, little is known about prognostic awareness and preferences for prognostic information. AIM:  To assess the prevalence of prognostic awareness and preference for prognostic information among advanced cancer patients in Kenya. SETTING:  Outpatient medical oncology and palliative care clinics and inpatient medical and surgical wards of Moi Teaching and Referral Hospital (MTRH) in Eldoret, Kenya. METHODS:  The authors surveyed 207 adults with advanced solid cancers. The survey comprised validated measures developed for a multi-site study of end-of-life care in advanced cancer patients. Outcome variables included prognostic awareness and preference for prognostic information. RESULTS:  More than one-third of participants (36%) were unaware of their prognosis and most (67%) preferred not to receive prognostic information. Increased age (OR = 1.04, 95% CI: 1.02, 1.07) and education level (OR: 1.18, CI: 1.08, 1.30) were associated with a higher likelihood of preference to receive prognostic information, while increased symptom burden (OR= 0.94, CI: 0.90, 0.99) and higher perceived household income levels (lower-middle vs low: OR= 0.19; CI: 0.09, 0.44; and upper middle- or high vs low: OR= 0.22, CI: 0.09, 0.56) were associated with lower odds of preferring prognostic information. CONCLUSION:  Results reveal low levels of prognostic awareness and little interest in receiving prognostic information among advanced cancer patients in Kenya.Contribution: Given the important role of prognostic awareness in providing patient-centred care, efforts to educate patients in Kenya on the value of this information should be a priority, especially among younger patients.

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

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

Impact of Lithium on the Immune System: An Investigation of T-Cell Subpopulations and Cytokine Responses in Rats.

The aim of this study was to investigate the dose-dependent adverse effects of long-term dietary lithium administration on specific aspects of the defense system in rats. Additionally, the study aimed to explore the inflammatory activities of lithium beyond its recognized anti-inflammatory properties. Forty Wistar Albino rats were involved, which were randomly allocated into the control and four treatment groups. The control group received standard rat feed, and the experimental groups' diet was added 1 g/kg, 1.4 g/kg, 1.8 g/kg, and 2.2 g/kg lithium bicarbonate, respectively. CD4+, CD8+, and CD161 + cells were assessed by flow cytometry. TNF-α, IFN-γ, IL-1ß, and IL-2 and IL-4, IL-6, and IL-10 levels were measured. The proportion of CD4 + cells and the CD4+/CD8 + ratio (P = 0.005 and P = 0.038, respectively) were reduced with the highest dose of lithium compared to the control group. The data regarding pro-inflammatory cytokines showed a dose-dependent increase in serum TNF-α and IFN-γ levels (P = 0.023 and P = 0.001, respectively). On the other hand, serum IL-1ß and IL-2 levels were decreased in a dose-dependent manner (P = 0. 001 and P = 0. 001, respectively). As for anti-inflammatory cytokines, a dose-dependent decrease was determined in serum IL-4 level (P = 0.002), while no significant changes were noted in IL-6 and IL-10 levels (P = 0.507 and P = 0.732, respectively). In conclusion, lithium adversely impacted the cellular defense system. Furthermore, apart from its anti-inflammatory properties, lithium exhibited cytokine-mediated inflammatory activities. Therefore, lithium's potential adverse effects on the immune system should be considered in immunodeficient patients and those with an inflammatory status treated with high doses of lithium.

Getting it right with discrete choice experiments: Are we hot or cold?

Discrete Choice Experiments (DCEs) are widely employed survey-based methods to assess preferences for healthcare services and products. While they offer an experimental way to represent health-related decisions, the stylized representation of scenarios in DCEs may overlook contextual factors that could influence decision-making. The aim of this paper was to evaluate the predictive validity of preferences elicited through a DCE in decisions likely influenced by a hot-cold empathy gap, and compare it to another commonly used method, a direct-elicitation question. We focused on preferences for pain-relief modalities, especially for an epidural during childbirth - a context where direct-elicitation questions have shown a preference for or intention to have a natural birth (representing the "cold" state), yet individuals often opt for an epidural during labor (representing the "hot" state). Leveraging a unique dataset collected from 248 individuals, we incorporated both the stated preferences collected through a survey administered upon hospital admission for childbirth and the actual pain-relief modality usage data documented in medical records. The DCE allowed for the evaluation of scenarios outside of those expected by respondents to simulate decision-making during childbirth. When we compared the predicted epidural use with the actual epidural use during labor, we observed a choice concordance of 71-60%, depending on the model specification. The concordance rate between the predicted and actual choices increased to 77-76% when accounting for the initial use of other ineffective modalities. In contrast, the direct-elicitation choices, relying solely on respondents' baseline expectations, yielded a lower concordance rate of 58% with actual epidural use. These findings highlight the flexibility of the DCE method in simulating complex decision contexts, including those involving hot-cold empathy gaps. The DCE proves valuable in assessing nuanced preferences, providing a more accurate representation of the decision-making processes in healthcare scenarios.

An Overview of Data Collection in Health Preference Research.

This paper focuses on survey administration and data collection methods employed for stated-preference studies in health applications. First, it describes different types of survey administration methods, encompassing web-based surveys, face-to-face (in-person) surveys, and mail surveys. Second, the concept of sampling frames is introduced, clarifying distinctions between the target population and survey frame population. The discussion then extends to different types of sampling methods, such as probability and non-probability sampling, along with an evaluation of potential issues associated with different sampling methods within the context of health preference research. Third, the paper provides information about different recruitment methods, including web-surveys, leveraging patient groups, and in-clinic recruitment. Fourth, a crucial aspect addressed is the calculation of response rate, with insights into determining an adequate response rate and strategies to improve response rates in stated-preference surveys. Lastly, the paper concludes by discussing data management plans and suggesting insights for future research in this field. In summary, this paper examines the nuanced aspects of survey administration and data collection methods in stated-preference studies, offering valuable guidance for researchers and practitioners in the health domain.

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.

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.

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.

Role Preferences in Medical Decision Making: Relevance and Implications for Health Preference Research.

Health preference research (HPR) is being increasingly conducted to better understand patient preferences for medical decisions. However, patients vary in their desire to play an active role in medical decisions. Until now, few studies have considered patients' preferred roles in decision making. In this opinion paper, we advocate for HPR researchers to assess and account for role preferences in their studies, to increase the relevance of their work for medical and shared decision making. We provide recommendations on how role preferences can be elicited and integrated with health preferences: (1) in formative research prior to a health preference study that aims to inform medical decisions or decision makers, (2a) in the development of health preference instruments, for instance by incorporating a role preference instrument and (2b) by clarifying the respondent's role in the decision prior to the preference elicitation task or by including role preferences as an attribute in the task itself, and (3) in statistical analysis by including random parameters or latent classes to raise awareness of heterogeneity in role preferences and how it relates to health preferences. Finally, we suggest redefining the decision process as a model that integrates the role and health preferences of the different parties that are involved. We believe that the field of HPR would benefit from learning more about the extent to which role preferences relate to health preferences, within the context of medical and shared decision making.

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.

Trade-Offs between Vaccine Effectiveness and Vaccine Safety: Personal versus Policy Decisions.

OBJECTIVE: We aimed to investigate whether individuals' trade-offs between vaccine effectiveness and vaccine safety vary if they are asked to consider the perspective of a policymaker making decisions for others compared with the decisions they would make for themselves. METHOD: A web-enabled discrete choice experiment survey was administered between 1 April and 1 May 2022 to participants recruited from the general population of two Southeast Asian countries (Indonesia and Vietnam). In each country, 500 participants were randomly assigned to make decisions regarding coronavirus disease 2019 (COVID-19) vaccines for others as a policymaker or in a personal capacity for their own use. Vaccines were characterized by three attributes: (1) effectiveness of the vaccine in reducing infection rate; (2) effectiveness of the vaccine in reducing hospitalization among those infected; and (3) risk of death from vaccine-related serious adverse events. A mixed logit model was utilized for analyses. RESULTS: Based on the attributes and levels used in this study, the most important vaccine attribute was the risk of death from vaccine-related adverse events, followed by effectiveness in reducing infection rate and hospitalizations. Compared with personal decisions, the mean probability of choosing a vaccine was (1) lower, and (2) more sensitive to the changes in risk of death from adverse events in policy decisions (p ≤ 0.01). CONCLUSIONS AND RELEVANCE: Our results suggest that, in the face of an infectious disease pandemic, individuals are likely to be more risk-averse to vaccine-related deaths when making decisions for others as a policymaker than they would for themselves.

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.

Older adult patient preferences for the content and format of prescription medication labels - A best-worst scaling and discrete choice experiment study.

BACKGROUND: Patient preferences for the content and format of prescription medication labels (PMLs, i.e., sticker labels placed on medication bottles/packets at dispensing) have been extensively studied. However, accommodating all preferences on PMLs is impractical due to space limitations. Understanding how patients prioritise the content and format attributes of PMLs can inform improvements while working within PML space constraints. OBJECTIVES: We aimed to (1) identify a ranking of medication-related content attributes to be prioritised on PMLs using best-worst scaling (BWS), and (2) determine the relative importance of format attributes when incorporated onto PMLs using discrete choice experiment (DCE), from the perspective of older adult patients in Singapore. METHODS: Attributes were informed by our prior qualitative study and PML best practice guidelines. For the BWS component, the assessed content attributes were indication, precautions, interaction or paired medicines, food instructions, side effects, expiry date, and missed dose action, all of which are currently not legally mandated on PMLs in Singapore. A BWS object case was used to rank the content attributes. For the DCE component, in a series of questions, participants were asked to choose between two PML options each time, that varied in the presentation of dosage-frequency instructions, font size, presentation of dosage, presentation of precautions, and font colour of precautions. A mixed logit model estimated the relative utilities of format attribute levels, enabling the calculation of importance scores of the format attributes. RESULTS: The study recruited 280 participants (mean age: 68.8 ± 5.4 years). The three most-preferred content attributes were indication, precautions and interaction or paired medicines. The top three format preferences were tabular style presentation of dosage-frequency instructions, large font size and precautions in red colour. CONCLUSIONS: Healthcare institutions should consider improving their PMLs based on the leading content and format preferences voiced by older adult patients. The methodology adopted in the study can also be used for aligning the content and format of other patient education materials with patient preferences.

Preferences for Enhanced Primary Care Services Among Older Individuals and Primary Care Physicians.

OBJECTIVE: We aimed to identify the factors that are most important for community-dwelling older individuals (i.e., users) and primary care (PC) providers to enhance PC services. METHODS: Discrete choice experiment surveys were administered to 747 individuals aged ≥ 60 years and 242 PC physicians in Singapore between December 2020 and August 2021. Participants were asked to choose between two hypothetical PC clinics and their current clinic. Latent class models were used to estimate the relative attribute importance (RAI) and to calculate the predicted uptake for enhanced PC services. RESULTS: Based on the attributes and levels used in this study, the out-of-pocket cost (RAI: 47%) and types of services offered (RAI: 25%) were the most important attributes for users while working hours (RAI: 28%) and patient load (RAI: 25%) were the most important for providers. For out-of-pocket visit costs ranging from Singapore dollars (S)$100 to S$5, users' predicted uptake for enhanced PC services ranged from 46 to 84%. For daily patient loads ranging from 60 to 20 patients, providers' predicted uptake ranged from 64 to 91%, assuming their income remains unchanged. CONCLUSIONS: Our study provides timely insights for the development of strategies to support the government's new health care initiative (HealthierSG), which places PC at the center of Singapore's healthcare system. The ability to choose their preferred clinic, low out-of-pocket costs and types of services offered (for users), and reasonable working conditions (for providers) were the key factors for users and providers to participate in enhanced PC services.

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

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

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.

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

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

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

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