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手部移植中评估“生活质量”的叙事方法:五个案例研究及生物伦理评论

Narrative methods for assessing "quality of life" in hand transplantation: five case studies with bioethical commentary.

作者信息

Herrington Emily R, Parker Lisa S

机构信息

University of Pittsburgh, 4200 Fifth Ave, Pittsburgh, PA, 15260, USA.

, 5440 5th Avenue #11, Pittsburgh, PA, 15232, USA.

出版信息

Med Health Care Philos. 2019 Sep;22(3):407-425. doi: 10.1007/s11019-018-09881-4.

DOI:10.1007/s11019-018-09881-4
PMID:30610430
Abstract

Despite having paved the way for face, womb and penis transplants, hand transplantation today remains a small hybrid of reconstructive microsurgery and transplant immunology. An exceptionally limited patient population internationally (N < 200) complicates medical researchers' efforts to parse outcomes "objectively." Presumed functional and psychosocial benefits of gaining a transplant hand must be weighed in both patient decisions and bioethical discussions against the difficulty of adhering to post-transplant medications, the physical demands of hand transplant recovery on the patient, and the serious long-term health risks of immunosuppressant drugs. This paper relates five narratives of hand transplantation drawn from an oral history project to show how narrative methods can and should inform ethical evaluations and the clinical process of hand transplantation. The interviews with patients and their partners analyzed here lead us to suggest that qualitative accounts of patient experiences should be used to complement clinical case studies reported in medical journals and to help develop instruments to assess outcomes more systematically.

摘要

尽管面部、子宫和阴茎移植已铺平道路,但如今手部移植仍是重建显微外科和移植免疫学的一个小分支。国际上患者群体极为有限(N<200),这使得医学研究人员“客观”剖析结果的努力变得复杂。在患者的决策以及生物伦理讨论中,获得移植手所假定的功能和心理社会效益,必须与坚持移植后用药的困难、手部移植恢复对患者的身体要求以及免疫抑制药物严重的长期健康风险相权衡。本文讲述了从一个口述历史项目中选取的五个手部移植故事,以展示叙事方法如何能够且应该为手部移植的伦理评估和临床过程提供信息。在此分析的对患者及其伴侣的访谈促使我们提出,患者经历的定性描述应用于补充医学期刊上报道的临床案例研究,并有助于开发更系统地评估结果的工具。

相似文献

1
Narrative methods for assessing "quality of life" in hand transplantation: five case studies with bioethical commentary.手部移植中评估“生活质量”的叙事方法:五个案例研究及生物伦理评论
Med Health Care Philos. 2019 Sep;22(3):407-425. doi: 10.1007/s11019-018-09881-4.
2
Acceptance of Vascularized Composite Allotransplantation (Face and Hand Transplant) in Singapore.新加坡对血管化复合组织异体移植(面部和手部移植)的接受情况。
Ann Plast Surg. 2018 Nov;81(5):615-618. doi: 10.1097/SAP.0000000000001626.
3
The Ethics of Hand Transplantation: A Systematic Review.手部移植伦理学:一项系统综述
J Hand Surg Am. 2018 Jan;43(1):84.e1-84.e15. doi: 10.1016/j.jhsa.2017.08.004. Epub 2017 Oct 4.
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Bilateral hand transplantation: Supporting the patient's choice.双侧手移植:支持患者的选择。
J Plast Reconstr Aesthet Surg. 2017 Feb;70(2):147-151. doi: 10.1016/j.bjps.2016.11.010. Epub 2016 Nov 24.
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Hand transplant surgery.手部移植手术。
Ann R Coll Surg Engl. 2014 Nov;96(8):571-4. doi: 10.1308/003588414X13946184902767.
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[Hand allograft transplantation: what are the implications?].[手部同种异体移植:有哪些影响?]
Presse Med. 2013 Dec;42(12):1650-4. doi: 10.1016/j.lpm.2012.05.033. Epub 2013 Oct 14.
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[Narrative Medicine can reduce opposition to organ removal for transplantation].叙事医学可以减少对器官摘除用于移植的反对意见。
G Ital Nefrol. 2019 Feb;36(1).
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Vascularized composite allotransplantation: an update on medical and surgical progress and remaining challenges.血管化复合组织同种异体移植:医学和手术进展及尚存挑战的最新综述。
J Plast Reconstr Aesthet Surg. 2013 Nov;66(11):1449-55. doi: 10.1016/j.bjps.2013.06.037. Epub 2013 Jul 16.
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Ethical considerations in composite tissue allotransplantation.复合组织同种异体移植中的伦理考量
Microsurgery. 2000;20(8):458-65. doi: 10.1002/1098-2752(2000)20:8<458::aid-micr19>3.0.co;2-g.
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Why Quality-of-Life Data Collection and Use Should Be Standardized When Evaluating Candidates for Hand Transplantation.为什么在评估手部移植候选人时应规范生活质量数据的收集和使用。
AMA J Ethics. 2019 Nov 1;21(11):E974-979. doi: 10.1001/amajethics.2019.974.

引用本文的文献

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Narrative Medicine: theory, clinical practice and education - a scoping review.叙事医学:理论、临床实践与教育——范围综述。
BMC Health Serv Res. 2024 Sep 27;24(1):1116. doi: 10.1186/s12913-024-11530-x.
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Ethical Considerations in Post-Mortem Sperm Retrieval: A Comprehensive Review.死后精子获取中的伦理考量:全面综述。
JBRA Assist Reprod. 2024 Jun 1;28(2):349-352. doi: 10.5935/1518-0557.20240022.
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A Single-Center Retrospective Evaluation of Decision-Making and Factors Motivating Hand Transplant Candidates.单中心回顾性评价手移植候选者的决策制定和动机因素。

本文引用的文献

1
Emerging Ethical Challenges Raised by the Evolution of Vascularized Composite Allotransplantation.血管化复合组织异体移植演进引发的新兴伦理挑战。
Transplantation. 2019 Jun;103(6):1240-1246. doi: 10.1097/TP.0000000000002478.
2
Innovations in reconstructive microsurgery: Reconstructive transplantation.重建显微外科的创新:重建移植术。
J Surg Oncol. 2018 Oct;118(5):800-806. doi: 10.1002/jso.25147. Epub 2018 Aug 11.
3
Messy entanglements: research assemblages in heart transplantation discourses and practices.混乱的纠葛:心脏移植话语与实践中的研究组合
Prog Transplant. 2023 Sep;33(3):216-222. doi: 10.1177/15269248231189863. Epub 2023 Aug 2.
4
Living with someone else's penis: The lived experiences of two South African penile allograft recipients: A descriptive phenomenological study.与他人的阴茎共存:两位南非阴茎移植受者的生活经历:一项描述性现象学研究。
Ann Med Surg (Lond). 2021 Sep 4;69:102794. doi: 10.1016/j.amsu.2021.102794. eCollection 2021 Sep.
Med Humanit. 2018 Mar;44(1):46-54. doi: 10.1136/medhum-2017-011212. Epub 2017 Sep 28.
4
A quiet revolution in organ transplant ethics.器官移植伦理的悄然变革。
J Med Ethics. 2017 Nov;43(11):797-800. doi: 10.1136/medethics-2015-103348. Epub 2017 Apr 19.
5
'There was no great ceremony': patient narratives and the diagnostic encounter in the context of Parkinson's.“没有盛大的仪式”:帕金森病背景下的患者叙述与诊断过程
Med Humanit. 2017 Mar;43(1):35-40. doi: 10.1136/medhum-2016-011054. Epub 2016 Nov 7.
6
Narrative medicine in a hectic schedule.忙碌日程中的叙事医学。
Med Health Care Philos. 2016 Dec;19(4):545-551. doi: 10.1007/s11019-016-9718-1.
7
Standardizing psychosocial assessment for vascularized composite allotransplantation.规范血管化复合组织异体移植的心理社会评估
Curr Opin Organ Transplant. 2016 Oct;21(5):530-5. doi: 10.1097/MOT.0000000000000351.
8
Composite Tissue Transplant of Hand or Arm: A Health Technology Assessment.手或手臂复合组织移植:一项卫生技术评估。
Ont Health Technol Assess Ser. 2016 Jun 1;16(13):1-70. eCollection 2016.
9
Rounds for Reflection (R4R): Enhancing the Physician-Patient Connection Through Storytelling.反思轮次(R4R):通过讲故事加强医患联系。
J Grad Med Educ. 2016 Jul;8(3):455-7. doi: 10.4300/JGME-D-15-00705.1.
10
The transplant team's support of kidney transplant recipients to take their prescribed medications: a collective responsibility.移植团队支持肾移植受者服用规定药物:一项共同责任。
J Clin Nurs. 2016 Aug;25(15-16):2251-61. doi: 10.1111/jocn.13267. Epub 2016 Jun 6.