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Mental Health Literacy and Public Stigma: Examining the Link in 17 Countries. 心理健康素养与公众耻辱感:研究 17 个国家的联系。
Pub Date : 2024-07-01 Epub Date: 2024-07-31 DOI: 10.18103/mra.v12i7.5471
Gabriele Ciciurkaite, Bernice A Pescosolido

Background: Literacy campaigns stand as the most common approach to raising awareness of mental health problems, increasing the use of services, and reducing stigma. However, research suggests that more informed public beliefs may have little effect or even trigger the stigma backlash. We aim to provide a wider, cross-national examination of how stigma varies globally and to examine whether the ability to recognize a mental health problem and see it as "a disease like any other" is the optimal roadmap for stigma reduction.

Methods: Data came from the Stigma in Global Context - Mental Health Study (SGC-MHS), which were collected from non-institutionalized adults 18 years of age or older through face-to-face interviews using vignettes meeting the Diagnostic and Statistical Manual of Mental Disorders, 4th edition clinical criteria for schizophrenia and major depression in 17 countries (N = 18,342; response rate 65.9%). Analyses of association between the public's endorsement of problem recognition, disease attributions, and severity on the desire for social distance were conducted using multivariate regression models in the structural equation modeling framework.

Results: For both depression and schizophrenia, countries fell into three groups of low, medium and high levels of public stigma. Consistently, Brazil and Germany anchored the lowest levels, Bangladesh and Hungary reported the highest levels, with Great Britain, USA, Belgium falling in midrange. Measures of mental health literacy did not have uniform effects, but, where significant, tended to align with expectations under labelling theory's ideas about rejection rather than attribution theory's claims for mental health literacy. Ironically, the most stable factor associated with lower stigma is the assessment that the situation will improve on its own, in direct contradiction to literacy theories.

Conclusion: Overall results suggest that anti-stigma efforts should move past a focus on mental health literacy or at least recognize its limitation and potential unintended consequences. Recognizing a situation as a mental illness can change the public's support for mental health services to some extent. The association between seeing the problem resolving on its own and lower stigma levels suggests that newer approaches that focus on connectedness and mental health may hold greater purchase to decrease public stigma and increase recovery.

背景:扫盲运动是提高人们对心理健康问题的认识、增加服务的使用和减少耻辱感的最常见方法。然而,研究表明,更多知情的公众信念可能收效甚微,甚至会引发成见反弹。我们的目标是对全球范围内的成见差异进行更广泛的跨国研究,并探讨认识到心理健康问题并将其视为 "与其他疾病一样的疾病 "的能力是否是减少成见的最佳路线图:数据来源于《全球背景下的污名化--心理健康研究》(SGC-MHS),该研究通过面对面访谈的方式收集了17个国家18岁及以上非住院成年人的数据,访谈中使用的小故事符合《精神疾病诊断与统计手册》第四版精神分裂症和重度抑郁症的临床标准(样本数=18342;回复率为65.9%)。在结构方程建模框架下,使用多变量回归模型分析了公众对问题认识、疾病归因和严重程度的认可与对社会距离的渴望之间的关联:就抑郁症和精神分裂症而言,各国的公众污名化程度分为低、中、高三组。巴西和德国的公众污名化程度最低,孟加拉国和匈牙利的公众污名化程度最高,英国、美国和比利时的公众污名化程度处于中等水平。心理健康素养的衡量标准并没有统一的效果,但在有意义的情况下,往往与贴标签理论关于拒绝的观点而不是归因理论关于心理健康素养的主张相一致。具有讽刺意味的是,与降低成见相关的最稳定因素是对情况会自行改善的评估,这与扫盲理论直接矛盾:总体结果表明,反污名化工作应超越对心理健康素养的关注,或至少认识到其局限性和潜在的意外后果。承认某种情况属于精神疾病,可以在一定程度上改变公众对心理健康服务的支持。看到问题自行解决与污名化程度降低之间的联系表明,注重联系性和心理健康的新方法可能更有可能减少公众的污名化,提高康复率。
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引用次数: 0
Redefining Cognitive Domains in the Era of ChatGPT: A Comprehensive Analysis of Artificial Intelligence's Influence and Future Implications. 重新定义 ChatGPT 时代的认知领域:全面分析人工智能的影响和未来意义。
Pub Date : 2024-06-01 Epub Date: 2024-06-24 DOI: 10.18103/mra.v12i6.5383
Souvik Dubey, Ritwik Ghosh, Mahua Jana Dubey, Subhankar Chatterjee, Shambaditya Das, Julián Benito-León

Background and objectives: Despite its extensive utilization, research on Chat Generative Pre-trained Transformer (ChatGPT)'s potential negative impact on specific cognitive processes is scarce. This article explores the widespread use of ChatGPT in educational, corporate, and various other sectors, focusing on its interaction with distinct cognitive domains such as attention, executive function, language, memory, visuospatial abilities, and social cognition.

Methods: A literature review was conducted using PubMed, identifying 256 articles, with 29 peer-reviewed articles analyzed after screening for relevance.

Results: The review emphasizes the extraordinary capabilities of the human brain, which often go unrecognized, and argues for the importance of maintaining and enhancing natural cognitive abilities using artificial intelligence tools like ChatGPT as an aid rather than a replacement. The findings highlight the advanced reasoning capabilities of ChatGPT, blending intuitive and deliberate cognitive processes.

Conclusion: Building a socio-cognitive architecture for collective human-machine intelligence has significant potential. While ChatGPT offers impressive capabilities, over-reliance on it for cognitive tasks can lead to the erosion of essential skills. It is crucial to find a balance between leveraging artificial intelligence's advantages and preserving our natural cognitive abilities, ensuring continuous practice and engagement in traditional cognitive exercises.

背景和目的:尽管聊天生成预训练转换器(ChatGPT)被广泛使用,但有关其对特定认知过程的潜在负面影响的研究却很少。本文探讨了 ChatGPT 在教育、企业和其他各个领域的广泛应用,重点关注其与注意力、执行功能、语言、记忆、视觉空间能力和社会认知等不同认知领域的相互作用:方法:使用 PubMed 进行文献综述,共找到 256 篇文章,经过相关性筛选后,对 29 篇同行评审文章进行了分析:综述强调了人脑的非凡能力,而这些能力往往不为人们所认识,综述还论证了使用人工智能工具(如 ChatGPT)作为辅助工具而非替代品来保持和增强自然认知能力的重要性。研究结果强调了 ChatGPT 的高级推理能力,它融合了直觉和深思熟虑的认知过程:为人机集体智能建立社会认知架构具有巨大潜力。虽然 ChatGPT 提供了令人印象深刻的能力,但过度依赖它来完成认知任务可能会导致基本技能的削弱。关键是要在利用人工智能的优势和保护我们的自然认知能力之间找到平衡点,确保不断练习和参与传统的认知练习。
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引用次数: 0
On the efficacy of facial masks to suppress the spreading of pathogen-carrying saliva particles during human respiratory events: Insights gained via high-fidelity numerical modeling. 关于口罩在人类呼吸道事件中抑制携带病原体的唾液颗粒扩散的功效:通过高保真数值建模获得的启示。
Pub Date : 2024-05-01 Epub Date: 2024-05-27 DOI: 10.18103/mra.v12i5.5441
Hossein Seyedzadeh, Jonathan Craig, Ali Khosronejad

Respiratory fluid dynamics is integral to comprehending the transmission of infectious diseases and the effectiveness of interventions such as face masks and social distancing. In this research, we present our recent studies that investigate respiratory particle transport via high-fidelity large eddy simulation coupled with the Lagrangian particle tracking method. Based on our numerical simulation results for human respiratory events with and without face masks, we demonstrate that facial masks could significantly suppress particle spreading. The studied respiratory events include coughing and normal breathing through mouth and nose. Using the Lagrangian particle tracking simulation results, we elucidated the transport pathways of saliva particles during inhalation and exhalation of breathing cycles, contributing to our understanding of respiratory physiology and potential disease transmission routes. Our findings underscore the importance of respiratory fluid dynamics research in informing public health strategies to reduce the spread of respiratory infections. Combining advanced mathematical modeling techniques with experimental data will help future research on airborne disease transmission dynamics and the effectiveness of preventive measures such as face masks.

呼吸道流体动力学是理解传染病传播以及口罩和社会隔离等干预措施的有效性所不可或缺的。在这项研究中,我们介绍了最近通过高保真大涡流模拟和拉格朗日粒子跟踪法研究呼吸道粒子传输的研究。根据我们对戴口罩和不戴口罩的人类呼吸事件的数值模拟结果,我们证明了口罩可以显著抑制粒子的传播。研究的呼吸事件包括咳嗽和正常的口鼻呼吸。利用拉格朗日粒子跟踪模拟结果,我们阐明了唾液粒子在呼吸周期中吸入和呼出时的传输路径,有助于我们了解呼吸生理和潜在的疾病传播途径。我们的研究结果强调了呼吸流体动力学研究在为公共卫生战略提供信息以减少呼吸道感染传播方面的重要性。将先进的数学建模技术与实验数据相结合,将有助于未来对空气传播疾病的动态以及口罩等预防措施的有效性进行研究。
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引用次数: 0
Barriers to Cervical Cancer Screening and Satisfaction with Self-Sampling among Black Women in Michigan: a Mixed Methods Study. 密歇根州黑人妇女进行宫颈癌筛查的障碍和对自我采样的满意度:一项混合方法研究。
Pub Date : 2024-04-01 Epub Date: 2024-04-26 DOI: 10.18103/mra.v12i4.5209
Elizabeth Haro, Emma A Butcher, Martha L Alves, Christelle El Khoury, Alexandra Vinson, Diane M Harper

Background: In recent years, cervical cancer screening among Black women in the United States has declined, followed by increased incidence and mortality. We aim to evaluate the individual, sociocultural, and structural barriers to cervical cancer screening in relationship to the exam technique barriers.

Methods: Participants received cervical cancer self-screening kits in the mail. They returned their samples and a quantitative survey developed from the Health Information National Trends Survey (HINTS) modules designed to address the known individual, sociocultural, and structural barriers to screening. We established the fourteen attributes of cervical cancer screening techniques from prior work. Participants then shared their experiences in a semi-structured qualitative interview informed by the Theoretical Domains Framework (TDF) to explore the answers to the survey questions. We coded themes from the interviews. Women were grouped as younger (30-45 years) and older (46-65 years).

Results: Of the 41 women completing the study, 21 were in the younger age group (mean 37.3, SD 4.7), and 20 were in the older age group (56.5 (5.5)). All participants self-identified as African American/Black and were due for cervical cancer screening. Women indicated that individual, sociocultural, and structural barriers influenced their cervical cancer screening, but the most significant barrier was the speculum-based technique itself. Three positive attributes and eight negative attributes significantly differed by screening technique, favoring the self-screening technique.

Conclusions: The self-screening technique for screening for cervical cancer is feasible and acceptable to this group of Black women.

背景:近年来,美国黑人妇女的宫颈癌筛查率有所下降,发病率和死亡率随之上升。我们旨在评估宫颈癌筛查的个人、社会文化和结构性障碍与检查技术障碍之间的关系:方法:参与者收到邮寄的宫颈癌自我筛查工具包。他们寄回了样本和根据全国健康信息趋势调查 (HINTS) 模块设计的定量调查,该模块旨在解决已知的个人、社会文化和结构性筛查障碍。我们根据先前的研究确定了宫颈癌筛查技术的 14 个属性。然后,参与者在理论领域框架 (TDF) 的指导下进行半结构化定性访谈,分享他们的经验,以探讨调查问题的答案。我们对访谈主题进行了编码。女性被分为年轻组(30-45 岁)和年长组(46-65 岁):在完成研究的 41 位女性中,21 位属于年轻组(平均 37.3 岁,标准差 4.7),20 位属于老年组(56.5 岁(5.5))。所有参与者均自认为是非裔美国人/黑人,并应接受宫颈癌筛查。妇女们表示,个人、社会文化和结构性障碍影响了她们的宫颈癌筛查,但最主要的障碍是窥器技术本身。三种积极属性和八种消极属性在筛查技术上存在显著差异,自我筛查技术更受青睐:结论:宫颈癌筛查的自我筛查技术是可行的,也是这群黑人妇女可以接受的。
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引用次数: 0
A Proposal of Utilizing Six Types of Involvement Model to Guide Kindergarten to 12th Grade School Parental Communication and Support During a Pandemic. 利用六种参与模式指导幼儿园至十二年级学校家长在大流行病期间的沟通和支持的建议》。
Pub Date : 2024-04-01 Epub Date: 2024-04-26 DOI: 10.18103/mra.v12i4.5178
Dan Li, Yueqi Li, Ziyi Zheng, Xin Zhou, Danielle Castro, Sten H Vermund, Marie A Brault
<p><strong>Background: </strong>Effective communication between schools and parents Is crucial for fostering understanding, trust, and collaboration to enhance educational outcomes and student well-being, especially during crises such as the COVID-19 pandemic. Moreover, the current level of communication between schools and families is frequently insufficient, exacerbating the difficulties in parental engagement, comprehension, and certain policy implementation. This deficiency becomes even more pronounced during crises due to the added stressors. This study aims to highlight the challenges of parental engagement and communication during the pandemic and propose a viable solution for school districts and schools to enhance trust, understanding, and collaboration in schools to prepare for future crises.</p><p><strong>Method: </strong>The study employs a mixed-methods approach, Including a scoping review of literature and policies on school communication during the pandemic, a survey study conducted among the Connecticut Independent Schools, and the Integration of results from both sources. The scoping review provides key themes and frameworks, while the survey collects quantitative and qualitative data to identify challenges and concerns. The proposed solution utilizes Epstein's Six Types of Involvement Framework for school districts and schools to guide effective communication and collaboration between schools and parents.</p><p><strong>Results: </strong>The scoping review and survey findings reveal several key Issues, Including hesitant parental perception of disease control strategies, the burden on parents in supporting online learning, the lack of resources and guidance for online learning, and the absence of central communication guidelines. The proposed solution, Epstein's Six Types of Involvement Framework, addresses these challenges by emphasizing parenting, communication, volunteering, learning at home, decision-making, and community collaboration.</p><p><strong>Conclusion: </strong>The study highlights the importance of effective communication between schools and parents during crises and proposes Epstein's Six Types of Involvement Framework as a comprehensive solution. By implementing this framework, schools can foster understanding, trust, and collaboration, leading to better educational outcomes for students. The findings have implications for school administrators, policymakers, and educators seeking to improve communication during crises and can facilitate more effective communication and parental engagement beyond health crises. Further research Is needed to evaluate the effectiveness and impact of implementing the framework in real-world crises. Moreover, healthcare professionals like pediatricians, psychologists, and school nurses are crucial in disease control in schools. The study proposes using Epstein's framework to Involve them directly, enhancing collaboration and trust, and empowering them to lead efforts in safeguarding
背景:学校与家长之间的有效沟通对于促进理解、信任和合作以提高教育成果和学生福祉至关重要,尤其是在 COVID-19 大流行病等危机期间。此外,目前学校与家庭之间的沟通水平往往不足,加剧了家长参与、理解和某些政策执行方面的困难。在危机期间,由于压力增加,这种不足变得更加明显。本研究旨在强调大流行病期间家长参与和沟通所面临的挑战,并为学区和学校提出可行的解决方案,以增强学校的信任、理解和合作,为未来的危机做好准备:本研究采用了一种混合方法,包括对有关大流行病期间学校沟通的文献和政策进行范围性回顾,在康涅狄格州独立学校中开展调查研究,以及对两种来源的结果进行整合。范围审查提供了关键主题和框架,而调查则收集了定量和定性数据,以确定挑战和关注点。建议的解决方案利用爱泼斯坦的 "学区和学校六类参与框架 "来指导学校与家长之间的有效沟通与合作:范围审查和调查结果揭示了几个关键问题,包括家长对疾病控制策略的认识犹豫不决、家长在支持在线学习方面的负担、缺乏在线学习的资源和指导,以及缺乏中央沟通指南。所提出的解决方案,即爱泼斯坦的六类参与框架,通过强调养育、沟通、志愿服务、在家学习、决策和社区合作来应对这些挑战:本研究强调了危机期间学校与家长之间有效沟通的重要性,并提出了爱泼斯坦的 "六类参与框架 "作为全面的解决方案。通过实施这一框架,学校可以促进理解、信任和合作,从而为学生带来更好的教育成果。研究结果对学校管理者、政策制定者和教育工作者改善危机期间的沟通具有重要意义,并能促进健康危机后更有效的沟通和家长参与。还需要进一步的研究来评估在现实危机中实施该框架的效果和影响。此外,儿科医生、心理学家和学校护士等医疗保健专业人员对学校的疾病控制至关重要。本研究建议利用爱泼斯坦的框架让他们直接参与进来,加强合作与信任,使他们有能力领导保障学生和教职员工健康的工作。
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引用次数: 0
Maternal and Newborn Outcomes of SARS-CoV-2/COVID-19 and Pregnancy: Parallels and Contrasts with Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome. SARS-CoV-2/COVID-19 与妊娠的产妇和新生儿结局:与人类免疫缺陷病毒/获得性免疫缺陷综合症的相似之处与对比。
Pub Date : 2024-04-01 Epub Date: 2024-04-29 DOI: 10.18103/mra.v12i4.5205
Dan Li, Jing Zhang, Xiaofen Zhang, Yifan Chang, Sten H Vermund

Purpose of review: Our review aims to compare and contrast Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome and SARS-CoV-2/COVID-19's impact on maternal and neonatal outcomes. We have made significant progress in Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome prevention and treatment over the last few decades. Drawing on empirical evidence with past public health crises can offer valuable insights into dealing with current and future pandemics. Therefore, it is imperative to conduct a comparative analysis of the resemblances and disparities existing between Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome and SARS-CoV-2/COVID-19.This research endeavor represents a pioneering and all-encompassing examination, aiming to discern and comprehend the parallels and contrasts in the respective impacts of SARS-CoV-2 and Human Immunodeficiency Virus on pregnancy.

Recent findings: Based on the current evidence, there is no indication that pregnancy increases women's susceptibility to acquiring Human Immunodeficiency Virus or SARS-CoV-2. Nevertheless, the state of being pregnant was correlated with the worsening of diseases and their progression. Both Human Immunodeficiency Virus and SARS-CoV-2 pose increased risks of maternal mortality and several obstetric complications, including premature birth and pre-eclampsia. While the vertical transmission of Human Immunodeficiency Virus is well-established, a comprehensive understanding of the vertical transmission of SARS-CoV-2 remains elusive, emphasizing the need for further investigations. Initial data suggest low SARS-CoV-2 vertical transmission rates in the setting of proper preventative interventions and universal screening. A cesarean delivery could reduce the risk of mother-to-child transmission in Human Immunodeficiency Virus-infected women with high viral loads or poor adherence to antiretroviral therapy (ART). However, it did not offer additional protection for Human Immunodeficiency Virus-infected women who adhered to Adherence to Antiretroviral Therapy or those with COVID-19. Human Immunodeficiency Virus and SARS-CoV-2 were linked to neonatal complications such as stillbirth, low birth weight, and neonatal intensive care unit (ICU) admissions. The universal testing of both pregnant patients and neonates is an effective strategy to prevent the spread and complications of both Human Immunodeficiency Virus and SARS-CoV-2. Human Immunodeficiency Virus control largely relies on preventing vertical transmission and medications during pregnancy and postpartum, whereas safety behaviors and vaccines have proven effective in preventing SARS-CoV-2 vertical transmissions.

Summary: This review aims to compare and contrast the impact of Human Immunodeficiency Virus and SARS-CoV-2 on pregnancy outcomes, vertical transmissions, delivery modalities, neonatal outcomes, and clinical management. SARS-CoV-2 and

综述目的:我们的综述旨在比较和对比人类免疫缺陷病毒/获得性免疫缺陷综合症和 SARS-CoV-2/COVID-19 对孕产妇和新生儿预后的影响。过去几十年来,我们在人类免疫缺陷病毒/获得性免疫缺陷综合症的预防和治疗方面取得了重大进展。借鉴以往公共卫生危机的经验证据,可以为应对当前和未来的流行病提供宝贵的启示。因此,有必要对人类免疫缺陷病毒/获得性免疫缺陷综合症和 SARS-CoV-2/COVID-19 之间的相似之处和不同之处进行比较分析。这项研究工作是一项开创性的、全方位的研究,旨在辨别和理解 SARS-CoV-2 和人类免疫缺陷病毒各自对妊娠的影响的相似之处和不同之处:根据目前的证据,没有迹象表明怀孕会增加妇女感染人类免疫缺陷病毒或 SARS-CoV-2 的可能性。然而,怀孕状态与疾病的恶化和进展有关联。人类免疫缺陷病毒和 SARS-CoV-2 都会增加孕产妇死亡的风险和一些产科并发症,包括早产和先兆子痫。虽然人类免疫缺陷病毒的垂直传播已得到证实,但对 SARS-CoV-2 的垂直传播仍然缺乏全面的了解,这就强调了进一步调查的必要性。初步数据表明,在采取适当的预防干预措施和进行普遍筛查的情况下,SARS-CoV-2 的垂直传播率较低。对于病毒载量高或抗逆转录病毒疗法(ART)依从性差的人类免疫缺陷病毒感染妇女,剖宫产可降低母婴传播的风险。然而,对于坚持抗逆转录病毒疗法的人类免疫缺陷病毒感染妇女或患有 COVID-19 的妇女来说,它并不能提供额外的保护。人类免疫缺陷病毒和 SARS-CoV-2 与新生儿并发症有关,如死胎、出生体重不足和新生儿重症监护室(ICU)住院。对孕妇和新生儿进行普遍检测是预防人类免疫缺陷病毒和 SARS-CoV-2 传播和并发症的有效策略。人类免疫缺陷病毒的控制主要依靠预防垂直传播和孕期及产后用药,而安全行为和疫苗已被证明能有效预防 SARS-CoV-2 垂直传播。摘要:本综述旨在比较和对比人类免疫缺陷病毒和 SARS-CoV-2 对妊娠结局、垂直传播、分娩方式、新生儿结局和临床管理的影响。SARS-CoV-2 和人类免疫缺陷病毒都与严重的产科相关并发症有关,因此密切的临床监测和准备工作至关重要。将 SARS-CoV-2/COVID-19 管理与生殖健康服务相结合,对于确保孕产妇和新生儿的预后至关重要。尽管人类免疫缺陷病毒/获得性免疫缺陷综合症与 SARS-CoV-2 对孕产妇和新生儿预后的影响有所不同,但我们的综述不仅首次为这一主题的知识现状及其临床影响奠定了基础,而且还为未来的研究方向提供了新的见解。利用人类免疫缺陷病毒/获得性免疫缺陷综合症的研究有助于了解 SARS-CoV-2 对妊娠的影响。这两种感染都会给孕妇及其胎儿带来风险,导致孕产妇死亡率和并发症增加。找出共同的模式和风险因素可以改善对 SARS-CoV-2 孕妇的临床管理。虽然直接进行观察研究进行比较可能不可行,但与人类免疫缺陷病毒进行比较则是一种符合道德规范且切实可行的方法。不过,仍有必要对 SARS-CoV-2 进行专门研究,以收集有关孕产妇和胎儿结局的详细数据。
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引用次数: 0
A Children's Rights Framework for Genomic Medicine: Newborn Screening as a Use Case. 基因组医学的儿童权利框架:以新生儿筛查为例。
Pub Date : 2024-03-01 Epub Date: 2024-03-26 DOI: 10.18103/mra.v12i3.5167
Luca Brunelli, Kee Chan, James Tabery, Warren Binford, Amy Brower

The year 2023 marked the 60th anniversary of screening newborns in the United States for diseases that benefit from early identification and intervention. All around the world, the goal of NBS is to facilitate timely diagnosis and management to improve individual health outcomes in all newborns regardless of their place of birth, economic circumstances, ability to pay for treatment, and access to healthcare. Advances in technology to screen and treat disease have led to a rapid increase in the number of screened conditions, and innovations in genomics are expected to exponentially expand this number further. A system where all newborns are screened, coupled with rapid technological innovation, provides a unique opportunity to improve pediatric health outcomes and advance children's rights, including the unique rights of sick and disabled children. This is especially timely as we approach the 100th anniversary of the 1924 Geneva Declaration of the Rights of the Child, which includes children's right to healthcare, and the 1989 United Nations Convention on the Rights of the Child that expanded upon this aspect and affirmed each child's right to the highest attainable standard of health. In this manuscript, we provide background on the evolving recognition of the rights of children and the foundational rights to healthcare and non-discrimination, provide two examples that highlight issues to access and equity in newborn screening that may limit a child's right to healthcare and best possible outcomes, detail ways the current approach to newborn screening advances the rights of the child, and finally, propose that the incorporation of genomics into newborn screening presents a useful case study to recognize and uphold the rights of every child.

2023 年是美国对新生儿进行疾病筛查的 60 周年纪念,早期识别和干预将使新生儿受益。在全世界,新生儿疾病筛查的目标是促进及时诊断和管理,以改善所有新生儿的个人健康状况,而不论其出生地、经济条件、支付治疗费用的能力和获得医疗保健的机会如何。筛查和治疗疾病技术的进步使筛查病症的数量迅速增加,而基因组学的创新有望使这一数量进一步成倍增长。一个对所有新生儿进行筛查的系统,再加上快速的技术创新,为改善儿科健康状况、促进儿童权利(包括患病和残疾儿童的独特权利)提供了一个独特的机会。在我们即将迎来 1924 年《日内瓦儿童权利宣言》(其中包括儿童的医疗保健权)和 1989 年《联合国儿童权利公约》发表 100 周年之际,这一点显得尤为及时。在本手稿中,我们将介绍儿童权利以及医疗保健和不受歧视的基本权利不断得到承认的背景,提供两个例子来强调新生儿筛查中可能会限制儿童医疗保健权利和最佳结果的获取和公平问题,详细介绍当前新生儿筛查促进儿童权利的方法,最后提出将基因组学纳入新生儿筛查是承认和维护每个儿童权利的一个有用的案例研究。
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引用次数: 0
Data-Driven Hypothesis Generation in Clinical Research: What We Learned from a Human Subject Study? 临床研究中的数据驱动假设生成:我们从一项人体研究中学到了什么?
Pub Date : 2024-02-01 Epub Date: 2024-02-28 DOI: 10.18103/mra.v12i2.5132
Xia Jing, James J Cimino, Vimla L Patel, Yuchun Zhou, Jay H Shubrook, Chang Liu, Sonsoles De Lacalle

Hypothesis generation is an early and critical step in any hypothesis-driven clinical research project. Because it is not yet a well-understood cognitive process, the need to improve the process goes unrecognized. Without an impactful hypothesis, the significance of any research project can be questionable, regardless of the rigor or diligence applied in other steps of the study, e.g., study design, data collection, and result analysis. In this perspective article, the authors provide a literature review on the following topics first: scientific thinking, reasoning, medical reasoning, literature-based discovery, and a field study to explore scientific thinking and discovery. Over the years, scientific thinking has shown excellent progress in cognitive science and its applied areas: education, medicine, and biomedical research. However, a review of the literature reveals the lack of original studies on hypothesis generation in clinical research. The authors then summarize their first human participant study exploring data-driven hypothesis generation by clinical researchers in a simulated setting. The results indicate that a secondary data analytical tool, VIADS-a visual interactive analytic tool for filtering, summarizing, and visualizing large health data sets coded with hierarchical terminologies, can shorten the time participants need, on average, to generate a hypothesis and also requires fewer cognitive events to generate each hypothesis. As a counterpoint, this exploration also indicates that the quality ratings of the hypotheses thus generated carry significantly lower ratings for feasibility when applying VIADS. Despite its small scale, the study confirmed the feasibility of conducting a human participant study directly to explore the hypothesis generation process in clinical research. This study provides supporting evidence to conduct a larger-scale study with a specifically designed tool to facilitate the hypothesis-generation process among inexperienced clinical researchers. A larger study could provide generalizable evidence, which in turn can potentially improve clinical research productivity and overall clinical research enterprise.

在任何以假设为导向的临床研究项目中,假设的产生都是早期的关键步骤。由于这还不是一个广为人知的认知过程,因此人们并未意识到改进这一过程的必要性。如果没有一个有影响力的假设,无论研究的其他步骤(如研究设计、数据收集和结果分析)是否严谨或努力,任何研究项目的意义都会受到质疑。在这篇视角独特的文章中,作者首先就以下主题进行了文献综述:科学思维、推理、医学推理、基于文献的发现,以及一项探索科学思维和发现的实地研究。多年来,科学思维在认知科学及其应用领域(教育、医学和生物医学研究)取得了卓越的进展。然而,文献综述显示,临床研究中缺乏关于假设生成的原创性研究。作者随后总结了他们的第一项人类参与研究,该研究探索了临床研究人员在模拟环境中以数据为驱动生成假设的过程。研究结果表明,二级数据分析工具 VIADS--一种用于过滤、总结和可视化使用分级术语编码的大型健康数据集的可视化交互式分析工具,可以缩短参与者生成假设所需的平均时间,而且生成每个假设所需的认知事件也更少。与此相对应的是,这项探索还表明,在应用 VIADS 时,由此产生的假设的质量评分在可行性方面的评分明显较低。尽管规模较小,但这项研究证实了在临床研究中直接开展人类参与者研究以探索假设生成过程的可行性。这项研究为开展更大规模的研究提供了支持性证据,研究中使用了专门设计的工具,以促进缺乏经验的临床研究人员的假设生成过程。更大规模的研究可以提供可推广的证据,进而有可能提高临床研究的生产力和整体临床研究事业。
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引用次数: 0
The Role of NLRP3 Inflammasome in the Pathogenesis of Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis. NLRP3 炎症球在史蒂文斯-约翰逊综合征/毒性表皮坏死溶解症发病机制中的作用
Pub Date : 2024-01-01 Epub Date: 2024-01-30 DOI: 10.18103/mra.v12i1.4939
Mallika Shekhar, Omer Iqbal, Adarsh Dharan, Hanin El-Khateeb, Kavya Jatavallabhula, Ping Bu, Charles Bouchard

Stevens Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN) are mainly drug-induced severe cutaneous adverse reactions with increased mortality. It also involves the eyes causing ocular surface disease leading to visual impairment and blindness. The role of NLRP3 Inflammasome in causing ocular surface disease and keratinocyte apoptosis is not fully explored. This study is focused on determining the role of NLRP3 Inflammasome in the pathogenesis of Stevens Johnson Syndrome/Toxic Epidermal Necrolysis. The NLRP3 Inflammasome plays a crucial role in the pathogenesis of Stevens Johnson Syndrome/Toxic Epidermal Necrolysis and may correlate with the degree of severity of skin detachment and ocular surface disease. This study looked at the expression of the NLRP3 Inflammasome in the skin of patients with biopsy confirm Stevens Johnson Syndrome/Toxic Epidermal Necrolysis compared to the lichen planus and normal controls by immunohistochemistry as well as observing the mitochondrial function of platelets challenged with plasma from patients with Stevens Johnson Syndrome/Toxic Epidermal Necrolysis and Normal Human Plasma using Agilent Seahorse XF Analyzer. Under a current, Loyola IRB approved protocol, 12 collected and archived unstained slides of skin and blood plasma samples from patients with biopsy confirmed Stevens Johnson Syndrome/Toxic Epidermal Necrolysis was used for this study. Immunohistochemical analysis was performed using anti-NLRP3 antibodies followed by imaging on a Delta Vision microscope. The precise roles of cytokines and chemokine receptors in severity of skin detachment has not been completely studied. The identification of the roles of NLRP3 in Stevens Johnson Syndrome/Toxic Epidermal Necrolysis would bridge the gaps in the basic understanding regarding the pathogenesis of this disease spectrum. NLRP3 Inflammasome is a potential therapeutic target and its inhibition by phytochemicals may be appropriate effective treatment strategies in the management of this condition.

史蒂文斯-约翰逊综合征/毒性表皮坏死溶解症(SJS/TEN)主要是由药物引起的严重皮肤不良反应,死亡率较高。它还会累及眼睛,引起眼表疾病,导致视力损伤和失明。NLRP3 炎症小体在引起眼表疾病和角质细胞凋亡中的作用尚未得到充分探讨。本研究的重点是确定 NLRP3 炎酶体在史蒂文斯-约翰逊综合征/毒性表皮坏死溶解症发病机制中的作用。NLRP3 炎症体在史蒂文斯-约翰逊综合征/毒性表皮坏死症的发病机制中起着至关重要的作用,可能与皮肤脱落和眼表疾病的严重程度相关。本研究通过免疫组化方法观察了活检证实的史蒂文斯-约翰逊综合征/毒性表皮坏死症患者皮肤中 NLRP3 炎症小体的表达情况,并与扁平苔藓和正常对照组进行了比较,还使用安捷伦海马 XF 分析仪观察了用史蒂文斯-约翰逊综合征/毒性表皮坏死症患者血浆和正常人血浆挑战血小板的线粒体功能。根据洛约拉研究所(Loyola IRB)批准的现行方案,本研究使用了从活检证实的史蒂文斯-约翰逊综合征/中毒性表皮坏死症患者身上采集并存档的 12 张未经染色的皮肤和血浆样本切片。使用抗 NLRP3 抗体进行免疫组化分析,然后在 Delta Vision 显微镜上成像。细胞因子和趋化因子受体在皮肤脱落严重程度中的确切作用尚未完全研究清楚。确定 NLRP3 在史蒂文斯-约翰逊综合征/毒性表皮坏死溶解症中的作用将弥补对该疾病谱发病机制的基本认识上的差距。NLRP3 炎症小体是一个潜在的治疗靶点,植物化学物质对它的抑制可能是治疗这种疾病的适当有效的治疗策略。
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引用次数: 0
Considerations on Design and Analysis of External Control in Pediatric Oncology. 儿科肿瘤学外部控制设计与分析的考虑因素。
Pub Date : 2024-01-01 Epub Date: 2024-03-04 DOI: 10.18103/mra.v12i1.5088
Jingjing Ye, Haitao Pan, Gregory Reaman, Satrajit Roychoudhury, Chengxing Lu, Lindsay A Renfro, Yuan Ji, Rong Liu, Ying Yuan, Weidong Zhang

Pediatric cancer consists of a diverse group of rare diseases. Due to limited patient populations, standard randomized and controlled trials are often infeasible. As a result, single-arm trials are common in pediatric oncology and the use of external controls is often desirable or necessary to help generate actionable evidence and contextualize trial results. In this paper, we illustrate unique features in pediatric oncology clinical trials and describe their impact on the use of external controls. Various types of relevant external control data sources are described in terms of their utility and drawbacks. Statistical methodologies and design implications with external control are discussed. Two recent case studies using external controls to support pediatric oncology drug development are described in detail.

儿童癌症由多种罕见疾病组成。由于患者人数有限,标准的随机对照试验往往不可行。因此,单臂试验在儿科肿瘤学中很常见,而使用外部对照往往是可取或必要的,以帮助产生可操作的证据并将试验结果具体化。在本文中,我们将说明儿科肿瘤临床试验的独特之处,并描述其对使用外部对照的影响。本文介绍了各类相关外部对照数据源的效用和缺点。还讨论了外部对照的统计方法和设计影响。详细介绍了最近两个使用外部对照支持儿科肿瘤药物开发的案例研究。
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引用次数: 0
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