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失去的远不止一次移植:一项关于肾移植受者移植失败经历的定性研究。

Losing Much More Than a Transplant: A Qualitative Study of Kidney Transplant Recipients' Experiences of Graft Failure.

作者信息

Slominska Anita Marie, Kinsella Elizabeth Anne, El-Wazze Saly, Gaudio Kathleen, Shamseddin M Khaled, Bugeja Ann, Fortin Marie-Chantal, Farkouh Mireille, Vinson Amanda, Ho Julie, Sandal Shaifali

机构信息

MEDIC, Research Institute of the McGill University Health Centre, Montreal, Quebec, Canada.

Institute of Health Sciences Education, Faculty of Medicine and Health Sciences, McGill University, Montreal, Quebec, Canada.

出版信息

Kidney Int Rep. 2024 Jul 17;9(10):2937-2945. doi: 10.1016/j.ekir.2024.07.011. eCollection 2024 Oct.

DOI:10.1016/j.ekir.2024.07.011
PMID:39430187
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11489391/
Abstract

INTRODUCTION

Kidney transplant recipients with graft failure are a growing cohort of patients who experience high morbidity and mortality. Limited evidence guides their care delivery and patient perspective to improve care processes is lacking. We conducted an in-depth exploration of how individuals experience graft failure, and the specific research question was: "What impact does the loss of an allograft have on their lives?"

METHODS

We adopted an interpretive descriptive methodological design. Semistructured in-depth narrative interviews were conducted with adult recipients who had a history of ≥1 graft failure. Data were collected until data saturation was achieved and analyzed using an inductive and thematic approach.

RESULTS

Our study included 23 participants from 6 provinces of Canada. The majority were on dialysis and not waitlisted for retransplantation (60.9%). Our thematic analysis identified that the lives of participants were impacted by a range of tangible and experiential losses that go beyond the loss of the transplant itself. The themes identified include loss of control, loss of coherence, loss of certainty, loss of hope, loss of quality of life, and loss of the transplant team. Although many perceived that graft failure was inevitable, the majority were unprepared. The confusion about eligibility for retransplantation appears to contribute to these experiences.

CONCLUSION

Individuals with graft failure experience complex mental and emotional challenges which may contribute to poor outcomes. The number of patients with graft failure globally is increasing and our findings can help guide practices aimed at supporting and guiding them toward self-management and adaptive coping.

摘要

引言

移植肾失功的肾移植受者群体不断壮大,这些患者的发病率和死亡率都很高。指导其护理的证据有限,且缺乏从患者角度改善护理流程的相关研究。我们深入探究了个体如何经历移植肾失功,具体研究问题为:“同种异体移植肾的丧失对他们的生活有何影响?”

方法

我们采用了解释性描述性方法设计。对有≥1次移植肾失功病史的成年受者进行了半结构化深度叙事访谈。持续收集数据直至数据饱和,并采用归纳和主题分析方法进行分析。

结果

我们的研究纳入了来自加拿大6个省份的23名参与者。大多数人正在接受透析,且未被列入再次移植的等候名单(60.9%)。我们的主题分析发现,参与者的生活受到一系列切实和体验性损失的影响,这些损失超出了移植肾本身丧失的范畴。确定的主题包括失去控制、失去连贯性、失去确定性、失去希望、生活质量下降以及失去移植团队。尽管许多人认为移植肾失功不可避免,但大多数人并未做好准备。关于再次移植资格的困惑似乎导致了这些体验。

结论

移植肾失功的个体经历着复杂的心理和情感挑战,这可能导致不良后果。全球移植肾失功患者的数量在增加,我们的研究结果有助于指导旨在支持和引导他们进行自我管理及适应性应对的实践。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3cb6/11489391/8505f13279d5/gr1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3cb6/11489391/83d80b9c8088/ga1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3cb6/11489391/8505f13279d5/gr1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3cb6/11489391/83d80b9c8088/ga1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3cb6/11489391/8505f13279d5/gr1.jpg

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本文引用的文献

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Shifting the focus from managing the failing kidney allograft to supporting the patient with a failing kidney allograft.将重点从管理失败的肾移植受者转变为支持患有失败肾移植的患者。
Kidney Int. 2023 Dec;104(6):1227. doi: 10.1016/j.kint.2023.09.006.
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Challenges in the management of the kidney allograft: from decline to failure: conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference.移植肾管理面临的挑战:从下降到衰竭:KDIGO 争议会议的结论。
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Perspectives and experiences of kidney transplant recipients with graft failure: A systematic review and meta-synthesis.
移植肾功能衰竭患者的观点和经验:系统评价和综合分析。
Transplant Rev (Orlando). 2023 Apr;37(2):100761. doi: 10.1016/j.trre.2023.100761. Epub 2023 Apr 13.
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Trends in the survival benefit of repeat kidney transplantation over the past 3 decades.过去 30 年来重复肾移植生存率获益的趋势。
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Experiences of adults living with a kidney transplant-Effects on physical activity, physical function, and quality of life: A descriptive phenomenological study.成年人肾移植后的体验——对身体活动、身体功能和生活质量的影响:一项描述性现象学研究。
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The Importance of Transplant Nephrology to a Successful Kidney Transplant Program.移植肾脏病学对成功的肾脏移植项目的重要性。
Clin J Am Soc Nephrol. 2022 Sep;17(9):1403-1406. doi: 10.2215/CJN.02000222. Epub 2022 Aug 1.
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Immunosuppressant Medication Use in Patients with Kidney Allograft Failure: A Prospective Multicenter Canadian Cohort Study.肾移植失败患者的免疫抑制剂药物使用:一项前瞻性多中心加拿大队列研究。
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