Variation in Patient-Reported Decision-Making Roles in the Last Year of Life among Patients with Metastatic Cancer: A Longitudinal Study.

OBJECTIVE: We investigated the variation in patient-reported decision-making roles in the past year of life among patients with metastatic solid cancer and the associations of these roles with patient quality of life and perceived quality of care. METHODS: We used the last year of life data of 393 deceased patients from a prospective cohort study. Patients reported their decision-making roles, quality of life (emotional well-being, spiritual well-being, and psychological distress) and perceived quality of care (care coordination and physician communication) every 3 months until death. We used mixed effects linear regressions to investigate the associations of decision-making roles with patients' quality of life and perceived quality of care. RESULTS: The most reported roles, on average, were patient-led (37.9%) and joint (23.4%; with physicians and/or family caregivers) decision making, followed by no patient involvement (14.8%), physician/family-led (12.9%), and patient alone (11.0%) decision making. Patient level of involvement in decision making decreased slightly as death approached (P < 0.05). Compared with no patient involvement, joint decision making was associated with better emotional well-being (ß [95% confidence interval] = 1.02 [0.24, 1.81]), better spiritual well-being (1.48 [0.01, 2.95]), lower psychological distress (-1.99 (-3.21, -0.77]), higher perceived quality of care coordination (5.04 [1.24, 8.85]), and physician communication (5.43 [1.27, 9.59]). Patient-led decision making was associated with better spiritual well-being (1.69 [0.24, 3.14]) and higher perceived quality of care coordination (6.87 [3.17, 10.58]) and physician communication (6.21 [2.15, 10.27]). CONCLUSION: Joint and patient-led decision-making styles were reported by 61% of the patients and were associated with better quality of life and quality of care. A decrease in the level of patient involvement over time indicates reliance on family and physicians as death approached. HIGHLIGHTS: Among patients with metastatic cancer, the level of patient involvement in decision making decreased slightly as death approached.Joint decision making of patients with their physicians and/or family caregivers and patient-led decision making were associated with better quality of life and perceived quality of care.Patients with metastatic cancer should be encouraged to be involved in decision making together with their physicians and/or family caregivers to potentially improve their end-of-life experience.

Patient-Reported Roles in Decision-Making Among Asian Patients With Advanced Cancer: A Multicountry Study.

Purpose. We investigated 1) perceived roles in decision-making among advanced cancer patients in 5 Asian countries 2) associations of patient characteristics with these roles, and 3) the association of perceived roles with quality of life and perceived quality of care. Methods. We surveyed 1585 patients with stage IV solid cancer. Multinomial logistic regressions were used to analyze associations of patient characteristics with decision-making roles. Multivariate regressions were used to analyze associations of decision-making roles with quality of life and care. Results. The most common perceived-role was no patient involvement. Most patients (73%) reported roles consistent with their preferences. Being male, nonminority, higher educated, aware of advanced cancer diagnosis, and knowledge of cancer diagnosis for ≥1 year were associated with higher levels of patient involvement in decision-making. Compared to no patient involvement, joint decision-making (together with physicians/family) was associated with higher social (ß = 2.49, P < 0.01) and spiritual (ß = 2.64, P < 0.01) well-being, and better quality of physician communication (ß = 9.73, P < 0.01) and care coordination (ß = 13.96, P < 0.01) while making decisions alone was associated with lower emotional (ß = -1.43, P < 0.01), social (ß = -2.39, P < 0.01), and spiritual (ß = -2.98, P < 0.01) well-being. Conclusions. Findings suggest that a substantial number of advanced cancer patients were not (and preferred not to be) involved in decision-making. Despite this finding, joint decision-making together with physicians/family was associated with better quality of life and care. Implications. Physicians should explain the benefits of shared decision making to patients and encourage participation in decision-making, while ensuring that patients feel supported and do not find decision-making overwhelming.

Patient Decision Aid Development for Older Adults With End-Stage Kidney Disease in Singapore.

INTRODUCTION: In managing end-stage kidney disease (ESKD), older adults face a decision regarding whether to undergo dialysis or manage symptoms through kidney supportive care (KSC). This article describes the development of a patient decision aid (PDA) that is designed specifically for older adults with ESKD. METHODS: The decision context of the PDA was to choose a treatment between hemodialysis, peritoneal dialysis, and KSC. The development process used insights obtained from qualitative interviews with patients, informal caregivers, and health care providers. The PDA was then developed in English and Mandarin and was pilot-tested with patients, caregivers, and health care providers. We finalized the PDA based on feedback from pilot testing and performed a preliminary evaluation based on the International Patient Decision Aid Standards (IPDASi v4.0) criteria. RESULTS: The final PDA consists of 2 booklets and a video. During pilot testing, patients and caregivers reported high levels of ease of understanding and usefulness with ≥92.5% providing agree/strongly agree responses for the "Content"-related criteria, and ≥75% providing agree/strongly agree responses for the "Development Process and Effectiveness"-related criteria. The final PDA met 10 of 12 IPDASi v4.0 criteria. CONCLUSIONS: This PDA was found useful during pilot-testing. It will be used during renal counseling in Singapore to help older adults with ESKD and their caregivers make informed decisions on which treatment option is best for the patients.

Public Preferences for Government Response Policies on Outbreak Control.

OBJECTIVE: The aim of this study was to assess the extent to which public support for outbreak containment policies varies with respect to the severity of an infectious disease outbreak. METHODS: A web-enabled survey was administered to 1017 residents of Singapore during the coronavirus disease 2019 (COVID-19) pandemic, and was quota-sampled based on age, sex, and ethnicity. A fractional-factorial design was used to create hypothetical outbreak vignettes characterised by morbidity and fatality rates, and local and global spread of an infectious disease. Each respondent was asked to indicate which response policies (among five policies restricting local movement and four border control policies) they would support in five randomly assigned vignettes. Binomial logistic regressions were used to predict the probabilities of support as a function of outbreak attributes, personal characteristics, and perceived policy effectiveness. RESULTS: Likelihood of support varied across government response policies but was generally higher for border control policies compared with internal policies. The fatality rate was the most important factor for internal policies, while the degree of global spread was the most important for border control policies. In general, individuals who were less healthy, had higher-income, and were older were more likely to support these policies. Perceived effectiveness of a policy was a consistent and positive predictor of public support. CONCLUSIONS: Our findings suggest that campaigns to promote public support should be designed specifically to each policy and tailored to different segments of the population. They should also be adapted based on the evolving conditions of the outbreak in order to receive continued public support.