Older adults preferences for long-term caregivers in China: a discrete choice experiment.

OBJECTIVE: Understanding the preferences of old-age adults for their long-term caregivers can improve person-centred health care and the quality of long-term care (LTC). This study examines Chinese older adults' preferences for long-term caregivers. STUDY DESIGN: This is a cross-sectional study. METHODS: A national representative discrete choice experiment (DCE) surveyed 2031 adults aged 50-70 across 12 provinces in China. Each DCE scenario described five attributes: type of caregivers, place of LTC, contents of LTC, out-of-pocket payments, and quality of life (QoL). Preferences and the marginal willingness to pay (WTP) were derived using mixed-logit and latent class models. RESULTS: Older adults displayed higher preferences for long-term caregivers who improve their QoL, incur lower out-of-pocket payments, and provide medical LTC services at home, with the maximum WTP of $22.832 per month. QoL was rated as the most important LTC factor, followed by the place of LTC and the type of caregivers. When the level of QoL improved from poor to good, respondents would be willing to pay $18.375 per month more (95% confidence interval: 16.858 to 20.137), and the uptake rate increased by 76.47%. There was preference heterogeneity among older people with different sex, education, family size, and knowledge of LTC insurance. CONCLUSION: QoL was the most important factor in older Chinese adults' preference for caregivers. Home care and medical care from formal caregivers was preferred by older adults. We recommend training family caregivers, raising older people's awareness of LTC insurance, and guiding policymakers in developing people-oriented LTC and a multi-level LTC system.

Structuring healthcare advance directives: Evidence from Chinese end-of-life cancer patients' treatment preferences.

BACKGROUND: Patients' treatment decisions may be influenced by the ways in which treatment options are presented. There is little evidence on how patients with advanced cancer choose preferences for advance directives (ADs) in China. Informed by behavioural economics, we assess whether end-of-life (EOL) cancer patients held deep-seated preferences for their health care and whether default options and order effects influenced their decision-making. METHODS: We collected data on 179 advanced cancer patients who were randomly assigned to complete one of the four types of ADs: comfort-oriented care (CC) AD (comfort default AD); a life extension (LE)-oriented care option (LE default AD); CC (standard CC AD) and LE-oriented (standard LE AD). Analysis of variance test was used. RESULTS: In terms of the general goal of care, 32.6% of patients in the comfort default AD group retained the comfort-oriented choice, twice as many as in the standard CC group without default options. Order effect was significant in only two individual-specific palliative care choices. Most patients (65.9%) appointed their children to make EOL care decisions, but patients choosing the CC goal were twice as likely to ask their family members to adhere to their choices than patients who chose the LE goal. CONCLUSION: Patients with advanced cancer did not hold deep-seated preferences for EOL care. Default options shaped decisions between CC and LE-oriented care. Order effect only shaped decisions in some specific treatment targets. The structure of ADs matters and influence different treatment outcomes, including the role of palliative care. PATIENT OR PUBLIC CONTRIBUTION: Between August and November 2018, from 640 cancer hospital medical records fitting the selection criteria at a 3A level hospital in Shandong Province, we randomly selected 188 terminal EOL advanced cancer patients using a random generator programme to ensure all eligible patients had an equal chance of selection. Each respondent completes one of the four AD surveys. While respondents might require support in making their healthcare choices, they were informed about the purpose of our research study, and that their survey choices would not affect their actual treatment plan. Patients who did not agree to participate were not surveyed.

Geographical disparities in treatment and health care costs for end-of-life cancer patients in China: a retrospective study.

BACKGROUND: Cancer imposes substantial burdens on cancer suffers, their families and the health system, especially in the end of life (EOL) of care patients. There are few developing country studies of EOL health care costs and no specialist studies of the disparities in cancer treatment and care costs by geographical location in China. We sought to examine geographical disparities in the types of cancer treatments and care costs during the last 3 months of life for Chinese cancer patients. METHODS: Using snowball sampling and face-to-face interviews, field research was conducted with a specialist questionnaire. Data were collected on 792 cancer patients who died between July 2013 and June 2016 in China. Total EOL health care costs were modeled using generalized linear models (GLMs) with log link and gamma distribution. RESULTS: Total health care costs were highest for urban (US$12,501) and western region (US$9808) patients and lowest for rural (US$5996) and central region (US$5814) patients. Our study revealed about 40% of the health care expenses occur in the last three months of life, and was mainly driven by hospital costs that accounted for about 70% of EOL expenditures. Patients faced out-of-pocket expenses for health care, with the ability to borrow from family and friends also impacting the type of treatment and health facility. Life-extending treatments per cancer patient was about two times that of patients receiving conservative treatments.Urban patients were more likely to receive life-extending treatments, financed by higher incomes and a greater capacity to borrow from family and friends to bridge the gap between health insurance reimbursements and out-of-pocket expenditures. Cancer patients in western region and urban area were significantly more likely to access hospice care. CONCLUSIONS: We found significant urban-rural and regional disparities in EOL types of cancer treatment, utilization of medical care and the health care expenditures. The EOL cancer care costs imposed heavy economic burdens in China.We recommend better clinical guidelines, improved EOL conversations and fuller information on treatment regimes among patients, family caregivers and doctors. Policies and information should pay more attention to palliative care options and the socio-cultural context of cancer care decision-making by family.

Catastrophic health expenditure of cancer patients at the end-of-life: a retrospective observational study in China.

BACKGROUND: Cancer is the second leading cause of death globally, causing a substantial economic burden on cancer suffers and their families. The aim of this study is to explore the prevalence, determinants and consequences of catastrophic health expenditure (CHE) among urban and rural end-of-life (EOF) cancer patients in China. METHODS: Using respondent-driven sampling and face-to-face interviews, field research was conducted with a specialist questionnaire. Data were collected on 792 cancer patients who died between June 2013 and June 2016 in China. The determinants of household catastrophic expenditure were identified by multivariate logistic regression. FINDINGS: It is found that more than 80% of cancer patients received life-extending treatment. Extremely high rates of CHE were identified among EOL cancer patients, at 94.3% for urban families and 96.1% for rural families. After spending for health, 84.1% of urban and 91.1% rural EOL cancer patient households were impoverished, falling below the poverty line. For both urban and rural households, income was the most significant factor associated with catastrophic health expenditure (CHE). Health insurance did not adequately compensate for CHE. Rural families experienced higher CHE, lower levels of health care utilization, a different mix of health care access and higher rates of borrowing for out-of-pocket (OOP) health care expenditures than urban families. Both urban and rural households suffered long-term economic disadvantage due to CHE and borrowing for OOP medical care expenses. CONCLUSIONS: EOL cancer patients experienced severe CHE, with families forced into poverty. With only about 1% of EOL cancer patients receiving palliative care, developing palliative care services and expanding the acceptance of palliative care in China is both urgent and essential. To help address impoverishment due to CHE, China should also develop targeted programs to reduce income inequality, especially rural-urban inequalities; increase access to health care; and accelerate health reform. Increasing the retirement age would provide households with more savings and wealth to withstand CHE.

Quality of life in caregivers of a family member with serious mental illness: Evidence from China.

PURPOSE: To evaluate the quality of life (QoL) and social support among family caregivers of a family member with a mental illness and to identify factors associated with the QoL. METHODS: This is a cross-sectional study, where participants were recruited and independently interviewed using a questionnaire, consisting of demographic characteristics, the Medical Outcome Survey SF-36 form, and social support rating scales. Multiple stepwise regression analysis was used to analyse the factors related to QoL. RESULTS: 181 family caregivers were recruited in Shandong province, China. On a composite QoL score, family caregivers perceived that their QoL was poor (68.3), especially in the aspects of role-physical (61.3), role-emotional (57.6) and mental health (63.0). We also found family caregivers received low social support, especially in objective support and utilization of social support. Patient's illness state, care time, financial burden and objective support were significantly correlated to caregivers' QoL in the physical component score (PCS). Patient's illness state, patient's marital status, family monthly income, caregiver's knowledge about the illness, caregivers coordinating caring, life and work, subjective support received and utility of support were significantly associated with caregivers' QoL in the mental component score (MCS). CONCLUSIONS: Social support had a significant correlation with caregivers' QoL. Caregivers should be encouraged to request assistance from other family members and friends in providing care, especially when caregivers are unemployed or long-time carers. Mental health education campaigns and helping families to maintain and enhance a supportive social network may provide useful means to improve caregivers' QoL.

Ecology of End-of-life Medical Care for Advanced Cancer Patients in China.

AIMS: Cancer is a leading cause of death worldwide. Approximately 30% of global cancer-related deaths occur in mainland China. However, there is a paucity of information regarding the end-of-life care-seeking behavior of patients with advanced cancer in China. Our study was to investigate end-of-life care-seeking behavior and to quantify the association between sociodemographic characteristics and the location and pattern of end-of-life care. METHODS: We conducted a mortality follow-back survey using caregivers' interviews to estimate the number of individuals pre 1000 who died between 2013 and 2021 in the last 3 months of life. We collected data on hospitalization, outpatient visits, cardiopulmonary resuscitation, palliative care and hospice utilization, and place of death, stratified by age, gender, marital status, household income, residential zone, insurance type, and the primary end-of-life decision-maker of the decedents. RESULTS: We analyzed data from 857 deceased cancer patients, representing an average of 1000 individuals. Among these patients, 861 experienced at least moderate or more severe pain, 774 were hospitalized at least once, 468 received intensive treatment, 389 had at least one outpatient visit, 270 died in the hospital, 236 received cardiopulmonary resuscitation and 99 received specialist hospice care. CONCLUSIONS: Our study provides insights into the end-of-life care-seeking behavior of advanced cancer patients in China and our findings serve as a useful benchmark for estimating the use of end-of-life medical care. It highlights the need for the establishment of an accessible and patient-centered palliative care and hospice system.

Association Between Primary Decision-Maker and Care Intensity Among Patients With Advanced Cancer in Mainland China.

Purpose: In China, decisions regarding the treatment of seriously ill patients are usually made by family caregivers. This study aimed to explore the association between the primary decision-makers and the intensity of care given to patients with advanced cancer in China. Methods: We conducted a survey of family members and other caregivers representing 828 cancer patients who died between July 2013 and July 2016. The survey asked: "After the physician conveyed that the disease is incurable, what treatment did the patient and caregiver prefer?" and "Who was the primary decision-maker?" We compared the treatment intensity with locus of decision-making using multivariable logistic regression, adjusting for socio-demographic and clinical covariates informed. Results: Of the 792 patients in our sample, the majority were male (67·2%), 60 years or older (64·0%), married (82·2%), lived with family (98·2%), had medical insurance (94·8%), earned below-average income (53·5%), lived rurally (61·5%), had a gastrointestinal cancer diagnosis (50·8%), experienced moderate or severe pain (86·3%), never received palliative care (80·4%) and had caregivers as primary decision-makers (70·6%). We found that patients were more likely to receive intensive disease-modifying treatments when the primary decision-maker were their children (adjusted odds ratio [AOR] = 1·86, 95% CI:1·26-2·74), spouse (AOR = 2·04, 95% CI:1·26-3·30), or other caregivers (AOR = 3·46, 95% CI:1·24-9·69). Conclusions: When patients with advanced cancer in China did not make their own medical decisions, they were more likely to receive intensive disease-modifying treatments at the end-of-life. Actions should be taken to better understand and ensure that caregivers' decisions reflect the values and presence of patients.

Individual Preferences for COVID-19 Vaccination under the China's 2021 National Vaccination Policy: A Discrete Choice Experiment Study.

(1) Background: Since China's national vaccination policy announcement in January 2021, individual vaccination preferences related to vaccine characteristics, social relationships, sociodemographic characteristics and cognition remain opaque. This study aims to investigate vaccination preferences regarding these attributes, and to assess changes in individual vaccine preferences since the pre-2021 emergency vaccination phase. (2) Methods: The two-part questionnaire surveyed 849 individuals between May and June 2021 in Qingdao, China. The survey contained eight binary choice tasks that investigated preference trade-offs. Respondents' sociodemographic characteristics, including age, sex, urban/rural residence, income, education and whether living with the young or old, were also collected. Conditional logit, mixed logit and latent class models were used to quantify preference utility and identify preference heterogeneity. (3) Results: Vaccine effectiveness, vaccine side effects, duration of protection and probability of infection all significantly affected vaccination utility. Preference heterogeneity based on individual social relationships and sociodemographic characteristics were also established. Marginal analysis showed that compared to the pre-2021 phase, individuals' preferences had shifted towards vaccines with longer protection periods and better accessibility. (4) Conclusion: This study will inform the full rollout of China's 2021 national vaccination program and provide valuable information for future vaccination policy design to meet resurgent COVID-19 risks.

Student COVID-19 vaccination preferences in China: A discrete choice experiment.

Objective: This study uses a discrete choice experiment (DCE) questionnaire to investigate student vaccination preferences for both intrinsic and extrinsic attributes. Methods: A two-part DCE questionnaire was distributed to 1,138 students through face-to-face interviews at vaccination centers in Qingdao, China. Conditional logit models were used to understand student preference trade-offs. Mixed logit models (MLM) and sub-group analysis were conducted to understanding student preference heterogeneity. Results: We found that students preferred vaccines with fewer side effects (ß = 0.845; 95% CI, 0.779-0.911), administered through third level health facilities (ß = 0.170; 95% CI, 0.110-0.230), and had at least 1 year duration of protection (ß = 0.396; 95% CI, 0.332-0.461. Higher perception of COVID-19 risks (ß = 0.492; 95% CI, 0.432-0.552) increased the likelihood of student vaccination uptake. Surprisingly, vaccine effectiveness (60%) and percentages of acquaintances vaccinated (60%) reduced vaccination utility, which points to free-rider problems. In addition, we find that student study majors did not contribute to preference heterogeneity, and the main disparities in preferences were attributed to student risk tolerances. Conclusion: Both intrinsic and extrinsic attributes were influential factors shaping student preferences for COVID-19 vaccines. Our results inform universities and local governments across China on targeting their vaccination programs.

Confucian Familism and Shared Decision Making in End-of-Life Care for Patients with Advanced Cancers.

Shared decision-making (SDM) has been institutionally recognized as clinically effective by many Western healthcare systems. Nevertheless, it appears culturally unattractive in China, a country that adheres to Confucian familism which strongly prefers collective family decisions. This study examined this conflict and assessed the influence of Confucian familism on SDM in end-of-life (EOL) care for advanced cancer patients. Between August and November 2018, 188 EOL advanced-cancer patients were randomly recruited from 640 cancer hospital medical records at a Tertiary A-level hospital in Shandong province. Eventually, 164 (87.23%) sample patients were included in the statistical analysis after the non-responsive cases (4.79%) and missing value (7.98%) were removed. SDM was measured through SDM-Q-9, and the patient's siblings were used as indicators of Confucian Familism. Of the 164 patients, the mean SDM score was 38/100; 47.6% were thoroughly unfamiliar with their treatment plans and fell outside the decision-making procedure. Each patient had four siblings on average. Ceteris paribus, more siblings led to lower SDM. Moreover, being 56-65 years old and open-minded were associated with higher SDM, while higher satisfaction of the quality of EOL care yielded lower SDM. In conclusion, Confucian familism weakened patient-clinician SDM in EOL care for advanced cancer patients.