MEDICAL ETHICS

医学伦理学
  • 文章类型: Journal Article
    背景:在未来的几年里,人工智能将成为医疗实践中不可或缺的工具。数字化转型无疑会影响当今的医学生。本研究主要从三组医学生的角度对信任进行研究-来自克罗地亚的学生,来自斯洛伐克的学生,和在斯洛伐克学习的国际学生。
    方法:使用非概率便利样本进行了纸笔调查。在2022年下半年,在克罗地亚的五个学院和斯洛伐克的三个学院对1715名学生进行了调查。
    结果:具体来说,38.2%的学生表示熟悉人工智能的概念,而44.8%的人认为他们将来会使用人工智能。患者实施技术的准备程度大多被评估为较低。超过一半的学生,59.1%,认为数字技术(AI)的实施将对患者与医生的关系产生负面影响,51.3%的学生认为患者会更不信任医生。在国际学生中观察到与该声明的共识最少,尽管斯洛伐克和克罗地亚学生表达了更高的共识,但40.9%的克罗地亚学生认为用户不信任医疗保健系统,56.9%的斯洛伐克学生同意这一观点,而只有17.3%的国际学生对此表示赞同。如果被问到,向患者解释AI是如何工作的能力对于不同的学生群体来说在统计学上是显著不同的。国际学生表达了最低的协议,而斯洛伐克和克罗地亚的学生表现出更高的协议。
    结论:这项研究为来自克罗地亚的医学生的态度提供了见解,斯洛伐克,和国际学生关于人工智能(AI)在未来医疗保健系统中的作用,特别强调信任的概念。三组学生之间观察到显着差异,国际学生与他们的克罗地亚和斯洛伐克同事不同。这项研究还强调了将人工智能主题整合到医学课程中的重要性,考虑到国家的社会和文化特殊性,如果不认真解决,可能会对人工智能的实施产生负面影响。
    BACKGROUND: In the years to come, artificial intelligence will become an indispensable tool in medical practice. The digital transformation will undoubtedly affect today\'s medical students. This study focuses on trust from the perspective of three groups of medical students - students from Croatia, students from Slovakia, and international students studying in Slovakia.
    METHODS: A paper-pen survey was conducted using a non-probabilistic convenience sample. In the second half of 2022, 1715 students were surveyed at five faculties in Croatia and three in Slovakia.
    RESULTS: Specifically, 38.2% of students indicated familiarity with the concept of AI, while 44.8% believed they would use AI in the future. Patient readiness for the implementation of technologies was mostly assessed as being low. More than half of the students, 59.1%, believe that the implementation of digital technology (AI) will negatively impact the patient-physician relationship and 51,3% of students believe that patients will trust physicians less. The least agreement with the statement was observed among international students, while a higher agreement was expressed by Slovak and Croatian students 40.9% of Croatian students believe that users do not trust the healthcare system, 56.9% of Slovak students agree with this view, while only 17.3% of international students share this opinion. The ability to explain to patients how AI works if they were asked was statistically significantly different for the different student groups, international students expressed the lowest agreement, while the Slovak and Croatian students showed a higher agreement.
    CONCLUSIONS: This study provides insight into medical students\' attitudes from Croatia, Slovakia, and international students regarding the role of artificial intelligence (AI) in the future healthcare system, with a particular emphasis on the concept of trust. A notable difference was observed between the three groups of students, with international students differing from their Croatian and Slovak colleagues. This study also highlights the importance of integrating AI topics into the medical curriculum, taking into account national social & cultural specificities that could negatively impact AI implementation if not carefully addressed.
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  • 文章类型: Clinical Trial Protocol
    背景:关于老年人严重伤害的沟通不畅可能导致与患者偏好不一致的治疗,制造冲突和紧张的医疗资源。我们开发了一种称为最佳病例/最差病例重症监护病房(ICU)的沟通干预措施,该措施使用日常情景规划,也就是说,对合理未来的叙述,为了支持预后并促进患者之间的对话,他们的家人和创伤ICU团队。本文介绍了一种多站点协议,随机化,阶梯式楔形研究,以测试干预措施对ICU沟通质量(QOC)的有效性。
    方法:我们将对所有50岁及以上的患者在8个高容量1级创伤中心严重受伤后入住ICU3天或更长时间进行随访。我们的目标是在他们的亲人入院后5-7天和在创伤ICU提供护理的临床医生后,对每位符合条件的患者进行调查。采用阶梯式楔形设计,我们将使用置换区组随机化为每个站点分配开始实施干预的时间,并常规使用最佳病例/最差病例-ICU工具.我们将使用线性混合效应模型来测试工具对家庭报告的QOC(使用QOC量表)与常规护理相比的影响。次要结果包括该工具对减少临床医生道德困扰(使用医疗专业人员道德困扰量表)和患者在ICU住院时间的影响。
    背景:威斯康星大学获得了机构审查委员会(IRB)的批准,所有研究地点都放弃了主要IRB的审查。我们计划在同行评审的出版物和国家会议上报告结果。
    背景:NCT05780918。
    BACKGROUND: Poor communication about serious injury in older adults can lead to treatment that is inconsistent with patient preferences, create conflict and strain healthcare resources. We developed a communication intervention called Best Case/Worst Case-intensive care unit (ICU) that uses daily scenario planning, that is, a narrative description of plausible futures, to support prognostication and facilitate dialogue among patients, their families and the trauma ICU team. This article describes a protocol for a multisite, randomised, stepped-wedge study to test the effectiveness of the intervention on the quality of communication (QOC) in the ICU.
    METHODS: We will follow all patients aged 50 and older admitted to the trauma ICU for 3 or more days after a serious injury at eight high-volume level 1 trauma centres. We aim to survey one family or \'like family\' member per eligible patient 5-7 days following their loved ones\' admission and clinicians providing care in the trauma ICU. Using a stepped-wedge design, we will use permuted block randomisation to assign the timing for each site to begin implementation of the intervention and routine use of the Best Case/Worst Case-ICU tool. We will use a linear mixed-effects model to test the effect of the tool on family-reported QOC (using the QOC scale) as compared with usual care. Secondary outcomes include the effect of the tool on reducing clinician moral distress (using the Measure of Moral Distress for Healthcare Professionals scale) and patients\' length of stay in the ICU.
    BACKGROUND: Institutional review board (IRB) approval was granted at the University of Wisconsin, and all study sites ceded review to the primary IRB. We plan to report results in peer-reviewed publications and national meetings.
    BACKGROUND: NCT05780918.
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  • 文章类型: Journal Article
    背景:在阿尔茨海默病和相关痴呆(ADRD)的临床研究中登记的知情决定需要仔细考虑复杂的风险和不确定的收益。关于是否接收关于生物标志物状态的信息的决定是复杂的,因为缺乏关于生物标志物作为阿尔茨海默病的替代终点的科学共识,以及关于个体风险的信息应如何评估和与研究参与者共享。本研究旨在就与ADRD研究参与者分享个人结果的道德最佳方法建立利益相关者共识。
    方法:这项Delphi共识构建研究包括与阿尔茨海默病研究专家进行的多项在线调查,包括神经学家,神经心理学家,伦理学家,研究监督专家和临床试验师。将对小组成员进行问卷调查,该问卷调查是根据已发表文献中确定的研究人员和参与者认可的考虑因素和决策需求以及在阿尔茨海默氏症协会研究补助金的支持下进行的决策需求评估进行的。小组成员还将被问及他们对分享个人研究结果的内容和实施过程的看法。达成共识需要≥75%的协议。响应率,级别的协议,中位数,将分析四分位数范围和小组排名。在每一轮数据收集之后,我们的研究小组将对开放式回应进行定性内容分析。
    背景:将获得克利夫兰诊所机构审查委员会的伦理批准(研究编号22-766)。在同意参与Delphi过程之前,Delphi小组成员将收到描述研究的参与者信息表。我们预期的数据结果将通过这项研究产生,并将提交给同行评审的期刊出版和在国际会议上的介绍。
    BACKGROUND: Informed decisions to enrol in the clinical investigations of Alzheimer\'s disease and related dementias (ADRD) require careful consideration of complex risks and uncertain benefits. Decisions regarding whether to receive information about biomarker status are complicated by lack of scientific consensus regarding biomarkers as surrogate endpoints for Alzheimer\'s disease and how information about individual risk should be evaluated and shared with research participants. This study aims to establish stakeholder consensus regarding ethically optimal approaches to sharing individual results with ADRD research participants.
    METHODS: This Delphi consensus-building study consists of multiple online surveys conducted with Alzheimer\'s disease research experts, including neurologists, neuropsychologists, ethicists, research oversight specialists and clinical trialists. Panellists will be administered questionnaires developed from a synthesis of researcher- and participant-endorsed considerations and decisional needs identified in published literature and a decisional needs assessment conducted with support from an Alzheimer\'s Association Research Grant. Panellists will also be asked their views on the content and implementation of processes for sharing individual research results. ≥75% agreement will be required to achieve consensus. Response rates, level of agreement, medians, interquartile ranges and group rankings will be analysed. Following each round of data collection, our research team will undertake qualitative content analysis of open-ended responses.
    BACKGROUND: Ethical approval will be obtained from the Cleveland Clinic Institutional Review Board (Study Number 22-766). Delphi panellists will receive participant information sheets describing the study before agreeing to participate in the Delphi process. Results from the data we anticipate will be generated through this research and will be submitted for peer-reviewed journal publication and presentation at international conferences.
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  • 文章类型: Journal Article
    目的:评估巴基斯坦医疗保健专业人员的生物伦理意识水平,关注与社会人口统计学特征的关联,道德培训和教学,医学伦理实践和具体的伦理问题。
    方法:横断面研究。
    方法:哈里普尔的公立和私立医院,巴基斯坦。
    方法:共有647名医疗保健专业人员参与了这项研究。
    方法:这项研究是在2023年3月至5月期间进行的,在加强流行病学检查表标准中的观察研究报告之后,涉及具有至少6个月患者护理实践经验的医疗保健专业人员。在密切监督下的提供者被建议不要对生物伦理学知识做出回应,由于潜在的道德困境,态度和实践调查表格。
    结果:医生和非医生都需要更多地了解生物伦理学。在基于工作类别/名称的道德培训和教学方面存在显着差异(p<0.05),道德观念因工作指定而大不相同。具体的伦理问题,例如接受患者和制药公司的礼物,推荐费,为特定产品提供建议,医疗错误的披露,患者保密,没有充分告知患者治疗和执行任务以获取经济利益,显示与医疗保健专业人员的指定有显著关联(p<0.05)。伦理意识得分也显示基于年龄的显著差异(p<0.05),种族,张贴地点,专业经验和组织的道德准则。
    结论:这项研究强调了医疗保健专业人员对某些道德问题的理解存在明显差距。与其他专业人员相比,护士对医疗保健实践的认识相对较低。通过有针对性的培训和健全的道德准则解决这些问题对于改善巴基斯坦医疗保健系统的患者护理至关重要。
    OBJECTIVE: To assess the level of bioethics awareness among healthcare professionals in Pakistan, focusing on the associations with sociodemographic characteristics, training and teaching of ethics, medical ethics practice and specific ethical issues.
    METHODS: Cross-sectional study.
    METHODS: Public and private hospitals in Haripur, Pakistan.
    METHODS: A total of 647 healthcare professionals participated in this study.
    METHODS: This study was conducted between March and May 2023, following Strengthening the Reporting of Observational Studies in Epidemiology checklist criterion, involving healthcare professionals with at least 6 months of experience in patient care practice. Providers under close supervision are advised not to respond to the bioethics knowledge, attitudes and practices survey form due to potential ethical dilemmas.
    RESULTS: Both physicians and non-physicians need to know more about bioethics. There was a significant difference (p<0.05) in ethical training and teaching based on job categories/designations, with ethical views differing greatly by job designation. Specific ethical issues, such as accepting gifts from patients and pharmaceutical companies, referral fees, advising specific products, disclosure of medical errors, patient confidentiality, not informing patients fully about treatment and performing tasks for financial gain, showed significant associations (p<0.05) with healthcare professional\'s designation. Ethical awareness scores also showed significant differences (p<0.05) based on age, ethnicity, place of posting, professional experience and the organisation\'s ethical guidelines.
    CONCLUSIONS: This study highlighted a notable gap in the understanding of certain ethical concerns among healthcare professionals, with nurses showing relatively lower awareness of healthcare practice compared with other professionals. Addressing these issues through targeted training and robust ethical guidelines is critical to improving patient care in Pakistan\'s healthcare system.
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  • 文章类型: Journal Article
    目的:作为FERN可行性研究的一部分,这项定性研究旨在探索父母和临床医生对可接受性的看法,一项随机对照试验(RCT)的可行性和设计,在单绒毛膜(MC)双胎妊娠合并早发型(24周前)选择性胎儿生长受限(sFGR)中,积极干预与期待治疗的比较.干预措施可能包括激光治疗或选择性终止,这可能导致一个或两个双胞胎死亡或严重残疾。
    方法:对父母和临床医生进行定性半结构化访谈。使用反身主题分析对数据进行了分析,并根据生物医学伦理学原则进行了考虑。
    方法:我们采访了19位英国父母(六位母亲,两个伴侣)或最近经历过(八个母亲,三名合作伙伴)MC双胎妊娠的早发性sFGR和来自英国和欧洲的14名专科临床医生。
    结果:参与者认为拟议的RCT是“道德模糊”,因为他们认为MC双胎妊娠sFGR的管理应根据sFGR的类型和严重程度进行个体化。临床医生优先考虑胎龄,尺寸,生长速度降低,对胎盘血管的访问和父母干预的可接受性。关于选择性终止的讨论和决策似乎会造成长期伤害(恶意)。对于父母和临床医生来说,最重要的结果是“活产”。对于临床医生来说,这是至少一个双胞胎的活产。对于父母来说,这意味着两个双胞胎的活产,即使这意味着他们的婴儿有神经发育障碍或残疾。
    结论:MC双胎妊娠sFGR的所有三种妊娠管理方法都有风险和益处,父母的最终目标是接受个性化护理,以实现两个双胞胎的最佳结果。RCT对于父母或临床医生来说是不可接受的,或者在道德上是合适的。应该考虑替代研究设计来回答这个重要的研究问题。
    OBJECTIVE: As part of the FERN feasibility study, this qualitative research aimed to explore parents\' and clinicians\' views on the acceptability, feasibility and design of a randomised controlled trial (RCT) of active intervention versus expectant management in monochorionic (MC) diamniotic twin pregnancies with early-onset (prior to 24 weeks) selective fetal growth restriction (sFGR). Interventions could include laser treatment or selective termination which could lead to the death or serious disability of one or both twins.
    METHODS: Qualitative semi-structured interviews with parents and clinicians. Data were analysed using reflexive thematic analysis and considered against the Principles of Biomedical Ethics.
    METHODS: We interviewed 19 UK parents experiencing (six mothers, two partners) or had recently experienced (eight mothers, three partners) early-onset sFGR in MC twin pregnancy and 14 specialist clinicians from the UK and Europe.
    RESULTS: Participants viewed the proposed RCT as \'ethically murky\' because they believed that the management of sFGR in MC twin pregnancy should be individualised according to the type and severity of sFGR. Clinicians prioritised the gestational age, size, decrease in growth velocity, access to the placental vessels and acceptability of intervention for parents. Discussions and decision-making about selective termination appeared to cause long-term harm (maleficence). The most important outcome for parents and clinicians was \'live birth\'. For clinicians, this was the live birth of at least one twin. For parents, this meant the live birth of both twins, even if this meant that their babies had neurodevelopmental impairment or disabilities.
    CONCLUSIONS: All three pregnancy management approaches for sFGR in MC twin pregnancy carry risks and benefits, and the ultimate goal for parents is to receive individualised care to achieve the best possible outcome for both twins. An RCT was not acceptable to parents or clinicians or seen as ethically appropriate. Alternative study designs should be considered to answer this important research question.
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  • 文章类型: Journal Article
    背景:补充和替代医学(CAM)的医学研究最近有所增加,引发了对CAM道德地位的伦理关注。医学学术期刊负责对手稿进行伦理审查(ER),以保护人类受试者的利益,并在决定发表之前提供伦理结果。然而,没有对CAM期刊中的ER进行系统分析。本研究旨在评估CAM期刊中道德要求和合规性的现状。
    方法:这是一项横断面研究。我们审查了期刊引文报告(2021)(https://jcr)中包含的CAM期刊作者(IFA)的说明。clarivate.com)获取ER的一般信息和要求。我们还浏览了CAM期刊在1月至6月Q1和Q2部分发表的随机对照试验的手稿,2023年,检查道德要求的实际情况。使用描述性统计和Fisher精确检验进行统计分析。
    结果:最终纳入了27种期刊和68份手稿。92.6%(25/27)的IFA包含ER的关键字,表明存在道德考虑。然而,CAM不需要特定的ER(n=0)。我们按地理来源对期刊进行分类,JCR部分,电子JCR年,研究的类型,%OAGold探讨可能影响CAM期刊制定一定伦理审查政策的因素。结果表明,在任何分类的期刊中,某些伦理审查政策均无统计学意义(p>0.05)。研究中包含的所有RCT手稿通常符合已发表期刊的伦理审查要求。
    结论:所有IFAs讨论的ER,但是内容是分散的,注意力不集中,并且没有关于CAM的特定ER要求。尽管手稿基本上符合期刊的要求,在手稿中不可能更接近ER的过程。为了确保这些政策在未来得到充分执行,CAM期刊应要求作者提供更多详细信息,或形成CAM伦理审查所需的项目清单。
    BACKGROUND: Medical research in complementary and alternative medicine (CAM) has increased recently, raising ethical concerns about the moral status of CAM. Medical academic journals are responsible for conducting ethical review (ER) of manuscripts to protect the interests of human subjects and to make ethical results available before deciding to publish. However, there has been no systematic analysis of the ER in CAM journals. This study is aim to evaluate the current status of ethical requirements and compliance in CAM journals.
    METHODS: This is a cross-sectional study. We reviewed instructions for authors (IFAs) of CAM journals included in the Journal Citation Reports (2021) ( https://jcr.clarivate.com ) for general information and requirements for ER. We also browsed the manuscripts regarding randomized controlled trials published by CAM journals in Q1 and Q2 section from January to June, 2023, to check the actual situation of ethical requirement. Descriptive statistics and Fisher\'s exact test were used for statistical analysis.
    RESULTS: 27 journals and 68 manuscripts were ultimately included. 92.6% (25/27) IFAs included keywords of ER, indicating the presence of ethical considerations. However, no specific ER was required for CAM (n = 0). We categorized journals by Geographic origin, JCR section, Year of electronic JCR, Types of studies, % of OA Gold to explore the factors that could influence CAM journals to have certain ethical review policies. The results showed there was no statistical significance in certain ethical review policy in any classification of journals (p > 0.05). All RCT manuscripts included in the study generally met the requirements of the published journals for ethical review.
    CONCLUSIONS: All IFAs discussed ER, but the content was scattered, unfocused, and there were no specific ER requirements regarding CAM. Although the manuscripts basically met the requirements of the journal, it was not possible to get closer to the process of ER in the manuscript. To ensure full implementation of these policies in the future, CAM journals should require authors to provide more details, or to form a list of items necessary for CAM ethical review.
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  • 文章类型: Journal Article
    目的:探索和比较2004年和2021年医生报告的道德困扰,并确定可能与这些反应相关的因素。
    方法:纵向调查。
    方法:数据来自挪威医师小组研究,挪威医生的代表性样本,2004年和2021年。
    方法:2004年为1499名医生,2021年为2316名医生。
    方法:使用相同的调查工具来衡量2004年至2021年道德困境的变化。Logistic回归分析了性别的作用,年龄和工作地点。
    结果:2004年的反应率为67%(1004/1499),2021年的反应率为71%(1639/2316)。由于时间限制而剥夺患者护理是医生道德困扰的最严重方面,2004年,68.3%的人报告说这“有点”或“道德上非常令人沮丧”,而2021年这一比例为75.1%。道德上的痛苦也增加了,因为“哭声最大”的患者比其他人得到更好,更快的治疗。关于漫长等待时间的陈述减少了道德困扰,由于经济限制而未提供治疗,取消对老年患者的优先考虑,违背自己的良心。在这两个时间点,女性报告的道德困扰高于男性,2021年和2004年的6个陈述存在显著的性别差异。受年龄和工作场所影响的报告道德困扰,尽管并非所有陈述都一致。
    结论:在2004年和2021年,与时间稀缺或资源分配不公平有关的医生道德困扰很高。与资源稀缺和违背良心的行为相关的道德困扰减少了,这可能表明医疗保健系统的改善。另一方面,这可能表明医生降低了他们的理想或期望,或者是道德上的疲劳。
    OBJECTIVE: To explore and compare physicians\' reported moral distress in 2004 and 2021 and identify factors that could be related to these responses.
    METHODS: Longitudinal survey.
    METHODS: Data were gathered from the Norwegian Physician Panel Study, a representative sample of Norwegian physicians, conducted in 2004 and 2021.
    METHODS: 1499 physicians in 2004 and 2316 physicians in 2021.
    METHODS: The same survey instrument was used to measure change in moral distress from 2004 to 2021. Logistic regression analyses examined the role of gender, age and place of work.
    RESULTS: Response rates were 67% (1004/1499) in 2004 and 71% (1639/2316) in 2021. That patient care is deprived due to time constraints is the most severe dimension of moral distress among physicians, and it has increased as 68.3% reported this \'somewhat\' or \'very morally distressing\' in 2004 compared with 75.1% in 2021. Moral distress also increased concerning that patients who \'cry the loudest\' get better and faster treatment than others. Moral distress was reduced on statements about long waiting times, treatment not provided due to economic limitations, deprioritisation of older patients and acting against one\'s conscience. Women reported higher moral distress than men at both time points, and there were significant gender differences for six statements in 2021 and one in 2004. Age and workplace influenced reported moral distress, though not consistently for all statements.
    CONCLUSIONS: In 2004 and 2021 physicians\' moral distress related to scarcity of time or unfair distribution of resources was high. Moral distress associated with resource scarcity and acting against one\'s conscience decreased, which might indicate improvements in the healthcare system. On the other hand, it might suggest that physicians have reduced their ideals or expectations or are morally fatigued.
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  • 文章类型: Journal Article
    目的:探索健康专业人员在黑狮专科医院(BLSH)肿瘤中心对癌症患者的突发坏消息(BBN)期间面临的经验和挑战,亚的斯亚贝巴,埃塞俄比亚2019年。
    方法:2019年3月,在埃塞俄比亚唯一的放疗综合肿瘤学中心进行了一项探索性定性物候学研究,采用深入访谈。使用有目的的最大变异抽样来选择参与者。采用OpenCode(V.4.02)辅助主题分析方法对数据进行分析。
    方法:11名肿瘤学保健医生(肿瘤学家,住院医师和护士)在肿瘤中心工作的人接受了采访。重复访谈和分析,直到理论饱和。
    结果:所有参与者都认识到正确有效的BBN实践的积极结果。然而,他们是凭经验练习的,没有标准化的协议或指南.提到了四个方面的挑战:(1)以设置为中心:不利的环境,缺乏协议或指导方针,难以接近的治疗,和心理治疗或咨询服务;(2)以医疗保健为中心,例如专业知识不足,由于患者负担而导致的时间不足,治疗积压,和转诊系统;(3)以患者/家庭为中心:医疗素养水平低,合规性差,和家庭干预;(4)社会文化:家庭对BBN和治疗方式的错误看法,宗教领袖的反对。
    结论:BBN对于BLSH肿瘤中心照顾患者的专业人员来说是具有挑战性的。因此,迫切需要改进实践。变革努力可能侧重于情境化的发展,内容和背景特定的实践导向培训计划和课程干预。提高社区和宗教领袖对癌症性质和治疗的认识也可能是一个有益的辅助手段。
    OBJECTIVE: To explore the experience and challenges health professionals face during breaking bad news (BBN) to patients with cancer in the oncology centre of Black Lion Specialized Hospital (BLSH), Addis Ababa, Ethiopia 2019.
    METHODS: An exploratory qualitative phenominological study using in-depth interviews was carried out in the only radiotherapy integrated oncology centre in Ethiopia during March 2019. Purposeful maximum variation sampling was used to select participants. OpenCode (V.4.02) assisted thematic analysis approach was employed to analyse the data.
    METHODS: Eleven oncology health practitioners (oncologists, residents and nurses) working at the oncology centre were interviewed. Repeated interviews and analysis were done until theoretical saturation.
    RESULTS: All participants were cognisant of the positive outcome of proper and effective practice of BBN. However, they were practicing it empirically, no standardised protocols or guidelines were in place. Four dimensions of challenges were mentioned: (1) setup centric: unconducive environment, lack of protocols or guidelines, inaccessible treatment, and psychotherapy or counselling services; (2) health care centric, such as inadequate expertise, inadequate time due to patient load,treatment backlog, and referral system; (3) patients/family centric: poor medical literacy level, poor compliance, and family interference; and (4) sociocultural: wrong perception of families on BBN and treatment modalities, and opposition from religious leaders.
    CONCLUSIONS: BBN is challenging for professionals caring for patients in the oncology centre of BLSH. Hence, there is a critical need to improve practices. Change efforts may focus on the development of contextualised, content and context specific practice oriented training programmes and curriculum interventions. Raising awareness of the community and religious leaders regarding the nature and treatment of cancer may also be a helpful adjunct.
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  • 文章类型: Journal Article
    肿瘤突变谱(MP)通常在来自为临床目的进行的活检的组织(诊断组织)上进行。我们旨在探讨癌症患者对谁应该拥有肿瘤活检组织的看法,支付其仓储费用,并决定其未来用途;并确定他们对进行额外活检的态度和预测因素,如果需要进行研究目的。在这种混合方法中,横断面研究,参加分子筛查和治疗计划的晚期实体癌患者(n=397)在接受MP治疗前完成了问卷调查(n=356/397).一个子集(n=23)也完成了定性访谈。50%的参与者认为他们和/或亲属应该拥有并控制对诊断组织的访问。大多数人(65.5%)认为政府应该支付组织准备费用。定性主题包括(1)诊断组织的保管,(2)随时间和文化之间组织价值的变化,(3)关于支付的股权,和(4)在决定额外活检时的成本效益考虑。政策和法规应考虑患者的观点。应考虑将公共资助的医疗保健扩展到包括用于临床试验的组织检索。
    Tumor mutation profiling (MP) is often conducted on tissue from biopsies conducted for clinical purposes (diagnostic tissue). We aimed to explore the views of patients with cancer on who should own tumor biopsy tissue, pay for its storage, and decide on its future use; and determine their attitudes to and predictors of undergoing additional biopsies if required for research purposes. In this mixed methods, cross-sectional study, patients with advanced solid cancers enrolled in the Molecular Screening and Therapeutics Program (n = 397) completed a questionnaire prior to undergoing MP (n = 356/397). A subset (n = 23) also completed a qualitative interview. Fifty percent of participants believed they and/or relatives should own and control access to diagnostic tissue. Most (65.5%) believed the government should pay for tissue preparation. Qualitative themes included (1) custodianship of diagnostic tissue, (2) changing value of tissue across time and between cultures, (3) equity regarding payment, and (4) cost-benefit considerations in deciding on additional biopsies. Policy and regulation should consider patient perspectives. Extension of publicly funded health care to include tissue retrieval for clinical trials should be considered.
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  • 文章类型: Letter
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