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Perinatal decision making as a decision scientist 作为决策科学家做围产期决策
IF 3.2 3区 医学 Q1 OBSTETRICS & GYNECOLOGY Pub Date : 2025-04-01 DOI: 10.1016/j.semperi.2025.152051
Barry Dewitt
Decision science offers an opportunity to understand perspectives on perinatal decision making, from understanding risk and uncertainty, to decision-maker preferences. Here, I describe a specific instance of making perinatal medical decisions from the perspective of a decision scientist and a parent navigating clinical uncertainty. I explain how clinical encounters did and did not provide the required information needed to make choices informed by decision science methods and results. My purpose is to provide modest inspiration to those working at the intersection of decision science and perinatal/neonatal medicine about problems their disciplines could solve to improve the experience of decision-makers.Years before I would have children of my own, I read Detlof von Winterfeldt's account of his wife deciding whether to undergo a procedure to try and move her nearly-term fetus out of the breech position (1). He describes his analysis of the problem, informed by his wife's values and preferences. That analysis revealed that the best decision was unambiguously not to do the procedure, despite the opposing view of his wife's physician, who had not thought through what the evidence meant for them, nor considered von Winterfeldt's wife's preferences. The account is an illustrative description of the decision-analytic method, showing how science, beliefs, and values can be integrated into a framework to guide medical (and other) decision making.
决策科学为了解围产期决策的观点提供了一个机会,从了解风险和不确定性到决策者的偏好。在这里,我描述了一个具体的例子,使围产期医疗决策从一个决策科学家的角度和家长导航临床不确定性。我解释了临床接触是如何提供和没有提供根据决策科学方法和结果做出选择所需的信息的。我的目的是为那些在决策科学和围产期/新生儿医学交叉领域工作的人提供适度的启发,让他们了解他们的学科可以解决的问题,以改善决策者的经验。在我有自己孩子的几年前,我读了德特洛夫·冯·温特菲尔德的一篇文章,书中讲述了他的妻子决定是否接受手术,试图将即将足月的胎儿从臀位移出。他根据妻子的价值观和偏好,描述了他对这个问题的分析。分析显示,最好的决定无疑是不做手术,尽管他妻子的医生持反对意见,他们没有考虑到证据对他们意味着什么,也没有考虑到冯·温特菲尔德妻子的偏好。该帐户是对决策分析方法的说明性描述,展示了如何将科学,信仰和价值观整合到指导医疗(和其他)决策的框架中。
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引用次数: 0
Medication decision making under uncertainty: Considering chronic disease and pregnancy potential 不确定条件下的用药决策:考虑慢性病和妊娠潜能
IF 3.2 3区 医学 Q1 OBSTETRICS & GYNECOLOGY Pub Date : 2025-04-01 DOI: 10.1016/j.semperi.2025.152057
Mehret Birru Talabi , Rebekah Miller , Tamar Krishnamurti
People with chronic illness who are (or could become) pregnant and their clinicians may face difficult decisions about the use of medications that can affect fetal health and development. In these situations, people must make the choice whether to use a drug with limited information about teratogenicity to treat their illness, putting an existing or potential pregnancy at risk. This manuscript serves as a call to action for all clinicians whose patients face such treatment choices regarding teratogenic medications or medications with unknown fetal safety. It offers an approach to guiding patient-provider conversations on medication management for individuals who are or might become pregnant, grounded in a review of the existing literature on medication decision making for drugs with known or potential teratogenic properties and informed by the current tools available for offering decision support. As a case study for highlighting current challenges and potential solutions around safe prescribing, we focus on two systemic autoimmune and rheumatic diseases, systemic lupus erythematosus and rheumatoid arthritis, which disproportionately affect females compared to males (with incidence ratios of 9:1 and 3:1, respectively). We address how recent reproductive policy changes that restrict abortion access may affect both a provider and a patient's decision calculus. Finally, we highlight several gaps that could be addressed by future research and the implementation of new data collection practices by federal bodies, while offering an approach to optimize patient-provider communication under conditions of ongoing uncertainty around the safety of drugs for those who may become pregnant while using them.
怀孕(或可能怀孕)的慢性疾病患者及其临床医生可能面临使用可能影响胎儿健康和发育的药物的困难决定。在这些情况下,人们必须做出选择,是否使用一种关于致畸性信息有限的药物来治疗他们的疾病,从而使现有或潜在的怀孕处于危险之中。这份手稿作为一个行动的呼吁,所有临床医生的病人面临这样的治疗选择关于致畸药物或药物与未知的胎儿安全性。它提供了一种方法来指导患者-提供者对话的药物管理的个人谁是怀孕或可能成为孕妇,在审查现有文献的药物决策与已知或潜在的致畸特性的基础上,并告知现有的工具提供决策支持。作为一个突出当前挑战和潜在解决方案的案例研究,我们重点研究了两种系统性自身免疫性和风湿性疾病,系统性红斑狼疮和类风湿关节炎,这两种疾病对女性的影响与男性相比不成比例(发病率分别为9:1和3:1)。我们讨论了最近限制堕胎的生殖政策变化如何影响提供者和患者的决策演算。最后,我们强调了可以通过未来的研究和联邦机构实施新的数据收集实践来解决的几个差距,同时提供了一种在药物安全性持续不确定的情况下优化患者与提供者沟通的方法,以帮助那些可能在使用药物时怀孕的人。
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引用次数: 0
Conceptualizing perinatal health-related quality of life for decision making 将围产期健康相关生活质量概念化以供决策
IF 3.2 3区 医学 Q1 OBSTETRICS & GYNECOLOGY Pub Date : 2025-04-01 DOI: 10.1016/j.semperi.2025.152049
Kim Dalziel
Increased health care needs during the perinatal period can significantly impact a patient's quality of life. Health-related quality of life (HRQoL) reflects the impact of a patient's health on their physical, mental and social wellbeing. Research has focused on development of tools suitable to measure HRQoL. These can be applied across the perinatal period from conception to postnatal care for use in clinical care, as an aid to shared decision making, in research and as an input to cost-effectiveness analyses used for resource allocation. HRQoL tools are a subset of Patient Reported Outcome Measures (PROMs), which help clinicians/researchers understand patient's experience of health. This essay serves as a primer to review the availability, validity and evidence of HRQoL tools for use in perinatal care. While some PROMs are routinely being implemented in pregnancy care, gaps remain regarding the specific impact of HRQoL tools on decision making and their potential use in family planning and neonatal care. Future research is needed to determine whether routine perinatal implementation of HRQoL tools will lead to stronger decision making for patients and providers. Involvement of parents in this process is essential to better understand how HRQoL tools can benefit decision making and perinatal care.
围产期保健需求的增加会显著影响患者的生活质量。与健康有关的生活质量(HRQoL)反映了患者的健康对其身体、精神和社会福祉的影响。研究的重点是开发适合测量HRQoL的工具。这些指标可应用于从受孕到产后护理的整个围产期,用于临床护理,帮助共同决策,用于研究,并作为资源分配所用的成本效益分析的投入。HRQoL工具是患者报告结果测量(PROMs)的一个子集,它帮助临床医生/研究人员了解患者的健康经历。这篇文章作为一个入门审查的可用性,有效性和证据HRQoL工具用于围产期护理。虽然在妊娠护理中常规实施了一些PROMs,但在HRQoL工具对决策的具体影响及其在计划生育和新生儿护理中的潜在应用方面仍然存在差距。未来的研究需要确定常规围产期实施HRQoL工具是否会给患者和提供者带来更强的决策。父母参与这一过程对于更好地理解HRQoL工具如何有利于决策和围产期护理至关重要。
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引用次数: 0
A tapestry of voices speaking to uncertainty 各种声音都在谈论不确定性
IF 3.2 3区 医学 Q1 OBSTETRICS & GYNECOLOGY Pub Date : 2025-04-01 DOI: 10.1016/j.semperi.2025.152063
Tamar Krishnamurti , Marlyse Haward
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引用次数: 0
Challenges in making an evidence-based prognosis 做出循证预后的挑战
IF 3.2 3区 医学 Q1 OBSTETRICS & GYNECOLOGY Pub Date : 2025-04-01 DOI: 10.1016/j.semperi.2025.152054
Matthew A. Rysavy
Prognosis is one of three traditional roles of clinicians, along with diagnosis and therapy. Prognostication—predicting and communicating about what to expect—plays a major, if overlooked, role in the day-to-day practice of both obstetricians and neonatologists. This article describes several challenges in formulating an evidence-based prognosis that practicing clinicians may find helpful to consider in their practice.
预后与诊断和治疗是临床医生的三大传统角色之一。在产科医生和新生儿科医生的日常实践中,预测和沟通预期会发生的事情扮演着一个重要的角色,如果被忽视的话。这篇文章描述了几个挑战,在制定一个基于证据的预测,实践临床医生可能会发现在他们的实践中有帮助的考虑。
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引用次数: 0
Towards better enrollment decision-making for perinatal clinical research: Reconsidering recruitment and consent processes to support family values and preferences 面向围产期临床研究更好的招生决策:重新考虑招募和同意过程,以支持家庭价值观和偏好
IF 3.2 3区 医学 Q1 OBSTETRICS & GYNECOLOGY Pub Date : 2025-04-01 DOI: 10.1016/j.semperi.2025.152055
Elliott Mark Weiss , Benjamin S. Wilfond , Stephanie A. Kraft

Objective

Whether to participate in clinical research is a special type of decision for parents with infants in the neonatal intensive care unit (NICU). Parents often report negative experiences being approached for NICU research and researchers struggle to enroll a representative sample. We consider how enrollment decision-making might be better supported by integrating learnings from clinical decision-making.

Finding

Approaches to supporting decision-making about clinical research, though distinct from those for clinical decision-making, share many similarities. We consider ways researchers may incorporate advances in knowledge about clinical decision-making to: (a) improve documents used for regulatory purposes (e.g., consent forms), and (b) better support relationship building between researchers and parents considering research enrollment.

Conclusion

Researchers may benefit from considering approaches to enrollment decision-making that draw on clinical decision-making methods. Future work should assess the impact of such approaches on parental experiences of recruitment; enrollment and retention rates; and representative inclusion of NICU populations.
目的新生儿重症监护病房(NICU)患儿家长是否参与临床研究是一种特殊类型的决策。父母经常报告为新生儿重症监护室研究接触的负面经历,研究人员很难招募有代表性的样本。我们考虑如何通过整合临床决策的学习来更好地支持入组决策。支持临床研究决策的方法虽然不同于临床决策的方法,但有许多相似之处。我们考虑研究人员如何将临床决策知识的进步纳入以下方面:(a)改进用于监管目的的文件(例如,同意书);(b)更好地支持研究人员和考虑研究入组的家长之间建立关系。结论考虑借鉴临床决策方法的入组决策方法对研究人员有益。未来的工作应评估这些方法对父母招聘经历的影响;入学率和保有率;并纳入有代表性的新生儿重症监护病房人群。
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引用次数: 0
Managing moral distress and complex ethical challenges in the NICU 处理新生儿重症监护室的道德困境和复杂的伦理挑战
IF 3.2 3区 医学 Q1 OBSTETRICS & GYNECOLOGY Pub Date : 2025-04-01 DOI: 10.1016/j.semperi.2025.152050
Béatrice Boutillier , Audrey Larone Juneau , Martin Reichherzer , Christine Tremblay , Annie Janvier

Background

In neonatology, end-of-life and complex ethical issues are frequent. This may lead to experiences of moral distress (MoD) for members of the clinical team. Here, we identify the causes, contributing factors, and contexts of MoD in the neonatal intensive care unit (NICU) and review interventions designed to manage complex ethical issues and alleviate MoD. We give a practical example of how support clinicians can help manage MoD.

Methods

Systematic reviews identify the causes, contributing factors, and contexts of MoD in NICUs as well as interventions to alleviate MoD. We trained an interdisciplinary team of support clinicians to be mentors in the NICU, to support other clinicians in managing the MoD associated with challenging cases.

Results

Managing MoD in NICUs is complex. Support clinicians actively assisted over 400 other clinicians. All were satisfied with the training and used their skills, mainly to optimize communication between clinicians and parents and/or for palliative care cases; 60% of all cases support clinicians managed were directly related to MoD; the majority resolved with initial reflective steps.

Conclusion

An interdisciplinary and multifaceted approach to addressing MoD in the NICU can be operationalized through support clinicians providing interdisciplinary and multifaceted interventions.
在新生儿科,生命终结和复杂的伦理问题是常见的。这可能会导致临床团队成员经历道德困扰(MoD)。在这里,我们确定了新生儿重症监护病房(NICU)中MoD的原因、影响因素和背景,并回顾了旨在管理复杂伦理问题和缓解MoD的干预措施。我们给出了一个实际的例子,说明临床医生如何帮助管理MoD。以及新生儿重症监护室中MoD的背景以及缓解MoD的干预措施。我们培训了一支跨学科的支持临床医生团队,作为新生儿重症监护室的导师,支持其他临床医生管理与挑战性病例相关的MoD。结果新生儿重症监护病房的MoD管理较为复杂。支持临床医生积极协助400多名其他临床医生。所有人都对培训感到满意,并将其技能用于优化临床医生与家长之间的沟通和/或姑息治疗病例;支持临床医生管理的所有病例中有60%与MoD直接相关;大多数人都采取了初步的反思措施。结论通过支持临床医生提供跨学科和多方面的干预措施,可以实现解决新生儿重症监护室MoD的跨学科和多方面的方法。
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引用次数: 0
Decision science in perinatal decision making 围产期决策中的决策科学
IF 3.2 3区 医学 Q1 OBSTETRICS & GYNECOLOGY Pub Date : 2025-04-01 DOI: 10.1016/j.semperi.2025.152064
Baruch Fischhoff
Perinatologists and the families they support face decisions that are challenging in their complexity and uncertainty. Decision science studies general properties of such decisions in simplified settings far removed from a Neonatal Intensive Care Unit. Perinatal decision making might be informed by decision science results. It might also challenge them. Each article in this provocative collection raises questions that can only be answered by collaboration between the disciplines. These questions consider how complex, uncertain decisions can be analyzed; how different decisions makers intuitively respond to them; and what interventions could support them, with better analysis, communication, or options. I hope to have framed the questions in ways that facilitate the needed collaborations.
围产期医生和他们所支持的家庭面临着复杂性和不确定性的挑战。决策科学研究这些决策的一般性质,在简化的设置,远离新生儿重症监护病房。围产期决策可能会受到决策科学结果的影响。这也可能对他们构成挑战。在这个挑衅性的集合中的每一篇文章提出的问题,只能通过学科之间的合作来回答。这些问题考虑的是如何分析复杂、不确定的决策;不同的决策者如何直观地对它们做出反应;以及哪些干预措施可以通过更好的分析、沟通或选择来支持他们。我希望我提出的问题能够促进必要的合作。
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引用次数: 0
Harms, risks and opportunities of uncertainty: It is not as toxic as we think 不确定性带来的危害、风险和机遇:它并不像我们想象的那么有害
IF 3.2 3区 医学 Q1 OBSTETRICS & GYNECOLOGY Pub Date : 2025-04-01 DOI: 10.1016/j.semperi.2025.152052
Marlyse F. Haward , Chantal Angueyra , John M. Lorenz
Uncertainty is ubiquitous in neonatal medicine often reflecting incomplete knowledge of diagnoses, prognosis and optimal treatments. It profoundly influences decision-making and the relationships between parents and clinicians. Despite its pervasiveness, uncertainty is often perceived as toxic, conflictive and something to be eliminated or minimized. However, when acknowledged and accepted, it can become a source of hope and a foundation for trust between parents and clinicians. This article explores the existing literature on uncertainty in antenatal decision-making organized around three themes: harms, opportunities and recommendations. We highlight the challenges uncertainty poses for both parents and clinicians, including its potential to create conflict, feelings of loss, regret, and bias. At the same time, we emphasize the importance for clinicians to understand and embrace uncertainty to support parents, facilitate honest and balanced communication, and build trusting relationships. We acknowledge the need for more research on effective strategies to help productively navigate uncertainty and propose an approach to supporting parents by positively leveraging the inherent uncertainty in antenatal medical decision-making.
不确定性在新生儿医学中普遍存在,通常反映了诊断、预后和最佳治疗的不完整知识。它深刻地影响决策和父母与临床医生之间的关系。尽管不确定性无处不在,但它往往被认为是有害的、冲突的,是需要消除或最小化的东西。然而,当它被承认和接受时,它可以成为希望的源泉,并成为父母和临床医生之间信任的基础。本文探讨了围绕三个主题组织的产前决策不确定性的现有文献:危害,机会和建议。我们强调了不确定性给父母和临床医生带来的挑战,包括它可能造成冲突、失落感、遗憾和偏见。同时,我们强调临床医生理解和接受不确定性的重要性,以支持父母,促进诚实和平衡的沟通,并建立信任的关系。我们承认需要对有效策略进行更多的研究,以帮助有效地应对不确定性,并提出一种方法,通过积极利用产前医疗决策中固有的不确定性来支持父母。
{"title":"Harms, risks and opportunities of uncertainty: It is not as toxic as we think","authors":"Marlyse F. Haward ,&nbsp;Chantal Angueyra ,&nbsp;John M. Lorenz","doi":"10.1016/j.semperi.2025.152052","DOIUrl":"10.1016/j.semperi.2025.152052","url":null,"abstract":"<div><div>Uncertainty is ubiquitous in neonatal medicine often reflecting incomplete knowledge of diagnoses, prognosis and optimal treatments. It profoundly influences decision-making and the relationships between parents and clinicians. Despite its pervasiveness, uncertainty is often perceived as toxic, conflictive and something to be eliminated or minimized. However, when acknowledged and accepted, it can become a source of hope and a foundation for trust between parents and clinicians. This article explores the existing literature on uncertainty in antenatal decision-making organized around three themes: harms, opportunities and recommendations. We highlight the challenges uncertainty poses for both parents and clinicians, including its potential to create conflict, feelings of loss, regret, and bias. At the same time, we emphasize the importance for clinicians to understand and embrace uncertainty to support parents, facilitate honest and balanced communication, and build trusting relationships. We acknowledge the need for more research on effective strategies to help productively navigate uncertainty and propose an approach to supporting parents by positively leveraging the inherent uncertainty in antenatal medical decision-making.</div></div>","PeriodicalId":21761,"journal":{"name":"Seminars in perinatology","volume":"49 3","pages":"Article 152052"},"PeriodicalIF":3.2,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144108088","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Prenatal genomic sequencing: Navigating uncertainty 产前基因组测序:导航不确定性
IF 3.2 3区 医学 Q1 OBSTETRICS & GYNECOLOGY Pub Date : 2025-04-01 DOI: 10.1016/j.semperi.2025.152058
Médéric Jeanne , Wendy K. Chung
Prenatal genomic sequencing is now routine for fetal structural anomalies. Prenatal genomic sequencing results inform medical decision-making and guide pre and postnatal management by identifying associated clinical features, allowing planning, coordination, and timely treatment and avoiding unnecessary additional diagnostic tests. However, clinical details are limited in the prenatal setting making diagnostic certainty more difficult. This leads to more frequent variants of uncertain significance (VUS) and accompanying questions of if and when to report VUS. We review current practices and recommendations on reporting VUS and include perspectives of parents. However, there are no clear recommendations for reporting uncertain prenatal results. With greater access to prenatal phenotypes from retrospective and prospective prenatal cases and postnatal cases with the same recurrent variant, there should be greater certainty of results and lower frequency of VUS over time.
产前基因组测序现在是常规的胎儿结构异常。产前基因组测序结果通过确定相关的临床特征,为医疗决策提供信息,并指导产前和产后管理,允许计划、协调和及时治疗,并避免不必要的额外诊断测试。然而,临床细节在产前设置是有限的,使诊断更加困难。这导致了更频繁的不确定意义变异(VUS)以及是否和何时报告VUS的问题。我们回顾了目前报告VUS的做法和建议,并包括家长的观点。然而,没有明确的建议报告不确定的产前结果。随着回顾性和前瞻性产前病例以及具有相同复发变异的产后病例更容易获得产前表型,随着时间的推移,结果应该更确定,VUS的频率应该更低。
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引用次数: 0
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Seminars in perinatology
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