Telehealth Care Through Internet Hospitals in China: Qualitative Interview Study of Physicians' Views on Access, Expectations, and Communication.

BACKGROUND: Internet hospitals in China are an emerging medical service model similar to other telehealth models used worldwide. Internet hospitals are currently in a stage of rapid development, giving rise to a series of new opportunities and challenges for patient care. Little research has examined the views of chronic disease physicians regarding internet hospitals in China. OBJECTIVE: We aimed to explore the experience and views of chronic disease physicians at 3 tertiary hospitals in Changsha, China, regarding opportunities and challenges in internet hospital care. METHODS: We conducted semistructured qualitative interviews with physicians (n=26) who had experience working in internet hospitals affiliated with chronic disease departments in 3 tertiary hospitals in Changsha, Hunan province, south central China. Interviews were transcribed verbatim and analyzed by content analysis using NVivo software (version 11; Lumivero). RESULTS: Physicians emphasized that internet hospitals expand opportunities to conduct follow-up care and health education for patients with chronic illnesses. However, physicians described disparities in access for particular groups of patients, such as patients who are older, patients with lower education levels, patients with limited internet or technology access, and rural patients. Physicians also perceived a gap between patients' expectations and the reality of limitations regarding both physicians' availability and the scope of services offered by internet hospitals, which raised challenges for doctor-patient boundaries and trust. Physicians noted challenges in doctor-patient communication related to comprehension and informed consent in internet hospital care. CONCLUSIONS: This study explored the experience and views of physicians in 3 tertiary hospitals in Changsha, China, regarding access to care, patients' expectations versus the reality of services, and doctor-patient communication in internet hospital care. Findings from this study highlight the need for physician training in telehealth communication skills, legislation regulating informed consent in telehealth care, public education clarifying the scope of internet hospital services, and design of internet hospitals that is informed by the needs of patient groups with barriers to access, such as older adults.

Informed consent in cancer clinical drug trials in China: a narrative literature review of the past 20 years.

BACKGROUND: Although the number of cancer clinical drug trials is increasing rapidly in China, issues concerning informed consent in this research context are understudied. By performing a narrative literature review, we aim to describe the current situation and identify the most salient challenges affecting informed consent in cancer clinical drug trials among adult patients in China since 2000. METHODS: We searched Web of Science (WOS), PubMed, Scopus, EMBASE, the Cochrane Library databases, China National Knowledge Infrastructure (CNKI), China Biomedical Literature Database on Disc (CBMdisc), Chinese Scientific Journals Fulltext Database (CQVIP), and WANFANG Data to identify relevant publications since 2000. Data were extracted by three reviewers on six items pertaining to study type, theme, and challenges. RESULTS: We identified 37 unique manuscripts, from which 19 full texts were obtained and six were included in the review. All six studies were published in Chinese journals, and the publication years of the majority (five out of six) of the studies were 2015 or later. The authors of the six studies were all from clinical departments or ethical review committees at five hospitals in China. All of the included publications were descriptive studies. Publications reported challenges related to the following aspects of informed consent: information disclosure, patient understanding, voluntariness, authorization, and procedural steps. CONCLUSION: Based on our analysis of publications over the past two decades, there are currently frequent challenges related to various aspects of informed consent in cancer clinical drug trials in China. Furthermore, only a limited number of high-quality research studies on informed consent in cancer clinical drug trials in China are available to date. Efforts toward improvement of informed consent practice, in the form of guidelines or further regulations in China, should draw on both experience from other countries and high-quality local evidence.

Ca-HELP: Adaptation of a Communication Tool to Help Geriatric Cancer Patients in Rural Settings Talk to Their Doctors About Pain.

Background and Objectives: Among the older adult population living in the rural United States, undertreated cancer pain is very common. The need for interventions targeting pain management communication between older adults with cancer in rural communities and their doctors outpaces the current evidence base. Adaptation of existing pain interventions may improve the speed at which clinicians can respond to pain in this vulnerable population. Research Design and Methods: The Cancer Health Empowerment for Living without Pain (Ca-HELP) is an evidence-based communication tool that coaches patients to communicate about pain by asking questions, making requests, and signaling distress to their physicians in order to achieve improved pain control. Guided by the Method for Program Adaptation through Community Engagement (M-PACE) model, which utilizes detailed stakeholder feedback to guide the adaptation of an intervention for an appropriate target audience, we proactively adapted the Ca-HELP and its delivery for use among geriatric cancer patients living in rural settings using qualitative feedback from patients, informal caregivers, and providers as a planned step in a multiphase pilot study. Results: All stakeholders agreed that the Ca-HELP was a promising candidate intervention to improve pain among older adults with cancer. They suggested modifications to the delivery, context, and content of the intervention. A multidisciplinary team of nurse leaders and researchers evaluated stakeholder feedback and recommendations before determining which adaptations were made. Adaptations were cataloged and reported using the Framework for Reporting Adaptations and Modifications-Enhanced model. Discussion and Implications: Our multistakeholder team proactively modified the Ca-HELP intervention tool using end-user feedback with a goal to optimize fit for use by older adults with cancer in rural settings without compromising the active ingredients. Documenting and reporting modifications to interventions are critical to their implementation and will lay the groundwork for further testing of the efficacy of the adapted Ca-HELP intervention.

Efficacy of a smartphone-based care support programme in improving post-traumatic stress in families with childhood cancer: protocol of a randomised controlled trial.

INTRODUCTION: Diagnosis and treatment represent distressing experiences for the families of children with cancer. Psychosocial challenges are faced by these families in China because of limited health services and resources for psychosocial oncology care. Effective interventions tailored to the knowledge level and cultural values of this population are needed. The goal of this study is to evaluate a smartphone-based care support (SBCS) programme for the families of children with cancer in China. METHODS AND ANALYSIS: A parallel randomised controlled trial will be conducted to examine the efficacy of an evidence-based and culturally tailored SBCS programme for the families of children with cancer in China. A total of 180 families will be recruited. The intervention will consist of an introduction session and four main sessions and will be conducted sequentially on a single weekend day. Participating families will be included in the intervention group. The post-traumatic stress and quality of life of families will be evaluated at baseline, during the intervention, immediately after the intervention, and 2 and 6 months after the intervention. ETHICS AND DISSEMINATION: Ethical approval for this protocol has been obtained from the Nursing and Behavioural Medicine Research Ethics Review Committee, Xiangya School of Nursing, Central South University (Protocol #: E2020125). The findings of the trial will be disseminated through conference presentations and publications in peer-reviewed journals. TRIAL REGISTRATION NUMBER: ChiCTR2000040510.

Chinese physicians' perceptions of palliative care integration for advanced cancer patients: a qualitative analysis at a tertiary hospital in Changsha, China.

BACKGROUND: Little previous research has been conducted outside of major cities in China to examine how physicians currently perceive palliative care, and to identify specific goals for training as palliative care access expands. This study explored physicians' perceptions of palliative care integration for advanced cancer patients in Changsha, China. METHODS: We conducted semi-structured qualitative interviews with physicians (n = 24) specializing in hematology or oncology at a tertiary hospital. RESULTS: Most physicians viewed palliative care as equivalent to end-of-life care, while a minority considered it possible to integrate palliative care with active treatment. Almost all physicians maintained separate conversations about palliative care with family members and patients, communicating more directly with family members than with patients about prognosis and goals of care. Physicians described experiencing ethical tension between the desire of family members to protect the patient from knowing they have advanced cancer, and the patient's "right to decide" about palliative treatment. Physicians varied overall regarding perceptions of the role they should have in discussions about goals of care. CONCLUSIONS: As palliative care access expands in China, medical training should encourage earlier integration of palliative care for advanced cancer, address ethical issues faced by physicians communicating about palliative care, and establish guidance on the role of the physician in discussions about goals of care.

Knowledge and Attitudes of Research Participants in China Toward Electronic Informed Consent in Clinical Trials: A Cross Sectional Study.

This study aims to investigate the knowledge and attitudes of participants and potential participants in clinical trials toward electronic informed consent. We conducted a survey-based cross-sectional study in Hunan Province, China in March 2021. A total of 547 respondents were included in this study. All questions in an 8-item survey section assessing participants' knowledge of electronic informed consent received correct answers from at least 70% of participants. In terms of attitude scores, most participants (86.3%) believed that electronic informed consent is more convenient than the paper-based version, and more than half (51.2%) believed that electronic informed consent could completely replace the paper-based version. Responses indicated that common concerns about electronic informed consent were its security and confidentiality, legal benefits, and implications for rights protection.

Cross-cultural validation of the IRB Researcher Assessment Tool: Chinese Version.

BACKGROUND: Using an effective method for evaluating Institutional Review Board (IRB) performance is essential for ensuring an IRB's effectiveness, efficiency, and compliance with applicable human research standards and organizational policies. Currently, no empirical research has yet been published in China evaluating IRB performance measures by the use of a standardized tool. This study was therefore conducted to develop a Chinese version of the IRB Researcher Assessment Tool (IRB-RAT), assess the psychometric properties of the Chinese version (IRB-RAT-CV), and validate the tool for use in China. METHODS: In this cultural adaptation, cross-sectional validation study, the IRB-RAT-CV was developed through a back-translation process and then distributed to 587 IRB staff members and researchers in medical institutions and schools in Hunan Province that review biomedical and social-behavioral research. Data from the 470 valid questionnaires collected from participants was used to evaluate the reliability, content validity, and construct validity of the IRB-RAT-CV. RESULTS: Participants' ratings of their ideal and actual IRB as measured by the IRB-RAT-CV achieved Cronbach's alpha 0.989 and 0.992, Spearman-Brown coefficient 0.964 and 0.968, and item-total correlation values ranging from 0.631 to 0.886 and 0.743 to 0.910, respectively. CONCLUSION: The IRB-RAT-CV is a linguistically and culturally applicable tool for assessing the quality of IRBs in China.

Developing Quality and Efficiency of Institutional Review Board Review Under a Human Research Protection Program at a Leading Hospital in Central Southern China: A Descriptive Analysis of the First Three Years.

This study analyzes the Institutional Review Board (IRB) quality and efficiency at a leading hospital in Central Southern China, under the first three years of a Human Research Protection Program (HRPP). We conducted a descriptive, retrospective analysis from 2015 through 2017. We extracted characteristics from the protocol archive in duplicate. Of 396 protocols submitted, 98% were approved. Mean protocol review time decreased from 23 to 15 calendar days, 344 serious adverse events SAEs were reviewed, and 93 conflicts of interest (COIs) were disclosed. IRB quality and efficiency mechanisms improved. Remaining needs include increased monitoring of COIs and unanticipated problem involving risks to subjects or others, distinctions between research types, and cooperation with specialized committees.

Breaking bad news about cancer in China: Concerns and conflicts faced by doctors deciding whether to inform patients.

OBJECTIVES: We aimed to explore how doctors in China decide whether to inform cancer patients about diagnosis and prognosis. METHODS: We conducted in-depth, semi-structured interviews with 24 doctors and residents from a leading hospital in Hunan, China. Data were analyzed by content analysis. RESULTS: Doctors routinely told the family about cancer first, then withheld information from patients if the family did not want to tell the patient. Three main themes emerged in relation to hiding bad news from patients: 1) fear that most patients lack resilience to cope with bad news; 2) fear of direct or legal conflict with the family, and 3) a value conflict between respecting the patient's "right to know" and respecting the family's interest in protecting the patient. CONCLUSIONS: Doctors consider decisions to withhold information from cancer patients to be a non-ideal but necessary compromise of the patient's "right to know." Culturally adjusted training and guidelines could help with including the patient in information disclosure while still respecting China's cultural value of family decision-making. PRACTICE IMPLICATIONS: Future training and guidelines should help doctors mediate between patient and family interests and understand changing laws and regulations. Other important elements include reflection, senior mentorship, self-awareness, and building trust.

Psychometric properties of the short-form UCLA Loneliness Scale (ULS-8) among Chinese adolescents.

Loneliness is prevalent and severe among adolescents, indicating the need for a reliable, valid, and concise instrument for detecting adolescent loneliness. This study aims to examine the psychometric properties of the Chinese version of the short-form UCLA Loneliness Scale (ULS-8) among Chinese adolescents.Computer-assisted self-interviewing was used to complete the questionnaire among 3480 junior or senior high school students aged 10 to 19 years. Construct validity was assessed using exploratory factor analysis (EFA) and confirmatory factor analysis (CFA). To test the concurrent validity and convergent validity of the scale, a single loneliness item and variables such as depression, suicidal ideation, and quality of interpersonal relationships were used. For reliability, Cronbach alpha and test-retest correlation were computed.Construct validity and internal consistency showed that the ULS-6, which excluded 2 reverse-scored items from the ULS-8, had stronger psychometric properties than the ULS-8. The convergent validity and concurrent validity were also supported by the study results. The overall Cronbach α of the ULS-6 was 0.878 and the test-retest reliability coefficient was 0.663.The ULS-6 showed satisfactory reliability and validity in this study, suggesting that this instrument can be used in the measurement of loneliness among Chinese adolescents.

Changing of suicide rates in China, 2002-2015.

BACKGROUND: The overall suicide rate in China has dropped substantially since the 1990s, with patterns changing significantly. This study aims to further explore the latest changes in suicide rates in China. METHODS: Data on gender-age-specific suicide rates for rural and urban residents aged 15 years and above were retrieved from official records. Joinpoint regression analyses were applied to analyze time trends of suicide rates. RESULTS: Overall, suicide rates in China dropped significantly from 2002 to 2015. However, the national suicide rates have decreased at a slower pace since 2006. Joinpoints on time trends of suicide rates were also observed among rural males, rural females and urban males in 2005, 2006 and 2008, respectively. Declines in suicide rates of a majority of groups aged 25-54 slowed around 2007, and even reversed among males aged 25-34 in both areas and rural males aged 45-54. Male suicide rates were increasingly higher than females' after 2006. Rural suicide rates were about twice those of urban groups in recent years. LIMITATIONS: Data on suicide is based on a large-sampled surveillance system, which may suffer from some quality flaws. Improvements in the quality of suicide rate data may lead to bias. Information on other potential differences in suicide rates over time is not available. CONCLUSIONS: Although the suicide rate in China dropped significantly from 2002-2015, a slowdown in the decrease and even a reversing trend was observed in some certain groups, which highlights the urgent need for targeted suicide prevention programs.