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解决消失双胞胎综合征中患者与医护人员的沟通差距:对患者护理和临床指南的影响。

Addressing Patient-Provider Communication Gaps in Vanishing Twin Syndrome: Implications for Patient Care and Clinical Guidelines.

作者信息

Cubbage Nichole M, Schilit Samantha L P, Groff Allison, Ernst Stephanie, Nascarella Marc A

机构信息

Department of Public Health, Behavioral and Health Sciences, Massachusetts College of Pharmacy and Health Sciences, Boston, MA 02115, USA.

Myriad Genetic Laboratories, Inc., Salt Lake City, UT 84116, USA.

出版信息

Healthcare (Basel). 2025 Aug 19;13(16):2048. doi: 10.3390/healthcare13162048.

DOI:10.3390/healthcare13162048
PMID:40868664
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12385883/
Abstract

: Vanishing twin syndrome (VTS) represents a complex and under-recognized phenomenon in multifetal pregnancies, associated with both clinical uncertainty and significant psychosocial impact. Despite its frequency, gaps remain in diagnostic clarity, international guidelines, and communication strategies with patients and families. : This hybrid review integrates narrative and systematic elements to assess the diagnostic, clinical, and psychosocial gaps in VTS. A systematic literature search was conducted across Medline/PubMed, CINAHL, PsycINFO, EBM Reviews, and Scopus using terms such as "vanishing twin syndrome," "patient-provider communicat*," and "bereave* care." Sources included systematic reviews, randomized controlled trials, cohort studies, and qualitative studies. Exclusion criteria were outdated publications (>10 years old). : Evidence revealed multiple domains of concern. Clinical risks and diagnostics remain poorly defined, with inconsistent recognition of maternal and neonatal complications. Psychosocial impacts were prominent, encompassing grief, identity disruption, and unmet support needs. Patient-provider communication was frequently inadequate, with insufficient training and lack of standardized language. International guidelines varied widely in scope, with only a few of them providing clear recommendations for bereavement care in multifetal loss contexts. : Emerging discourse highlights the limitations of the traditional fission model and alternative conceptual frameworks, such as Herranz's model, for understanding VTS. These theoretical differences underscore the need for precise terminology and consistent diagnostic practices. Clinical implications extend to prenatal screening, obstetric management, and the integration of psychosocial support. Patient-centered communication and structured support initiatives (e.g., the Butterfly Project) demonstrate the potential to bridge communication gaps and improve care experiences. : VTS requires recognition as both a medical and psychosocial condition. Improved clinical definitions, harmonized international guidelines, and emphasis on empathetic communication are essential to address the current gaps. Integrating these elements into practice may enhance patient outcomes and provide families with validation and support following multifetal loss.

摘要

消失双胎综合征(VTS)是多胎妊娠中一种复杂且未得到充分认识的现象,它既存在临床不确定性,又会产生重大的心理社会影响。尽管其发生率较高,但在诊断清晰度、国际指南以及与患者和家庭的沟通策略方面仍存在差距。

本混合综述整合了叙述性和系统性要素,以评估消失双胎综合征在诊断、临床和心理社会方面的差距。通过在Medline/PubMed、CINAHL、PsycINFO、EBM Reviews和Scopus数据库中进行系统的文献检索,使用了“消失双胎综合征”“医患沟通”和“丧亲护理”等术语。资料来源包括系统评价、随机对照试验、队列研究和定性研究。排除标准为过时的出版物(超过10年)。

证据显示了多个令人关注的领域。临床风险和诊断仍不明确,对孕产妇和新生儿并发症的认识不一致。心理社会影响较为突出,包括悲伤、身份认同紊乱以及未得到满足的支持需求。医患沟通往往不足,培训不够且缺乏标准化语言。国际指南的范围差异很大,其中只有少数为多胎妊娠丢失情况下的丧亲护理提供了明确建议。

新出现的论述强调了传统分裂模型以及诸如赫兰兹模型等替代概念框架在理解消失双胎综合征方面的局限性。这些理论差异凸显了精确术语和一致诊断实践的必要性。临床意义延伸到产前筛查、产科管理以及心理社会支持的整合。以患者为中心的沟通和结构化支持举措(如蝴蝶计划)显示出弥合沟通差距和改善护理体验的潜力。

消失双胎综合征需要被视为一种医学和心理社会状况。改进临床定义、统一国际指南以及强调共情沟通对于弥补当前差距至关重要。将这些要素融入实践可能会改善患者的治疗结果,并在多胎妊娠丢失后为家庭提供认可和支持。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3a71/12385883/baa46d14b1b1/healthcare-13-02048-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3a71/12385883/baa46d14b1b1/healthcare-13-02048-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3a71/12385883/baa46d14b1b1/healthcare-13-02048-g001.jpg

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本文引用的文献

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The Experiences of Patients With Vanishing Twin Syndrome: A Mixed-Methods Exploration of Patient Satisfaction and Miscarriage Information.消失双胞胎综合征患者的经历:对患者满意度和流产信息的混合方法探索
Twin Res Hum Genet. 2025 Mar 21:1-6. doi: 10.1017/thg.2025.10.
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Vanishing twins, selection , and infant mortality in the United States.美国的消失双胎、选择与婴儿死亡率
Evol Med Public Health. 2025 Jan 8;13(1):5-13. doi: 10.1093/emph/eoae035. eCollection 2025.
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ISUOG Practice Guidelines (updated): role of ultrasound in twin pregnancy.
国际妇产科超声学会(ISUOG)实践指南(更新版):超声在双胎妊娠中的作用
Ultrasound Obstet Gynecol. 2025 Feb;65(2):253-276. doi: 10.1002/uog.29166. Epub 2025 Jan 15.
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Mediastinal Teratoma in a Twin Pregnancy: A Case Report.双胎妊娠合并纵隔畸胎瘤:一例报告
Cureus. 2024 Nov 5;16(11):e73074. doi: 10.7759/cureus.73074. eCollection 2024 Nov.
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Gestational Trophoblastic Disease: Complete versus Partial Hydatidiform Moles.妊娠滋养细胞疾病:完全性与部分性葡萄胎
Diseases. 2024 Jul 17;12(7):159. doi: 10.3390/diseases12070159.
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