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Sibling stem cell donor experiences at a single institution.单一机构中同胞干细胞供者的经历。
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2
Being a haematopoietic stem cell donor for a sick sibling: Adult donors' experiences prior to donation.作为患病兄弟姐妹的造血干细胞捐献者:成年捐献者在捐献前的经历。
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Through the eyes of young sibling donors: the hematopoietic stem cell donation experience.从年轻的同胞捐赠者视角看:造血干细胞捐赠经历
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4
Comparable outcomes of allogeneic peripheral blood versus bone marrow hematopoietic stem cell transplantation from a sibling donor for pediatric patients.同胞供者异基因外周血与骨髓造血干细胞移植治疗儿童患者的疗效相当。
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6
Having a sibling as donor: patients' experiences immediately before allogeneic hematopoietic stem cell transplantation.作为供者的兄弟姐妹:异基因造血干细胞移植前患者的即时体验。
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Hematopoietic stem cell donation: psychological perspectives of pediatric sibling donors and their parents.造血干细胞捐献:儿科同胞捐献者及其父母的心理视角
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Hematopoietic stem cell donation in children: a review of the sibling donor experience.儿童造血干细胞捐献:同胞供者经历综述
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The experience of adults with sickle cell disease and their HLA-matched adult sibling donors after allogeneic hematopoietic stem cell transplantation.成年镰状细胞病患者及其人类白细胞抗原匹配的成年同胞供者在异基因造血干细胞移植后的经历。
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Pediatric Hematopoietic Cell Transplantation: A Longitudinal Assessment of Health-Related Quality of Life of Pediatric Donors.儿科造血细胞移植:对儿科供者健康相关生活质量的纵向评估。
J Clin Psychol Med Settings. 2023 Dec;30(4):836-845. doi: 10.1007/s10880-022-09933-1. Epub 2023 Jan 21.
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Growth in the face of overwhelming pressure: A narrative review of sibling donor experiences in pediatric hematopoietic stem cell transplant.在巨大压力下的成长:儿童造血干细胞移植中同胞供者经验的叙述性综述。
J Child Health Care. 2023 Mar;27(1):60-77. doi: 10.1177/13674935211043680. Epub 2021 Sep 27.
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Pilot Study of Educational Interventions for Pediatric Hematopoietic Stem Cell Sibling Donors to Increase Knowledge of Donation and Transplantation Procedures.针对儿科造血干细胞同胞捐赠者的教育干预措施的初步研究,以增加对捐赠和移植程序的了解。
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Donor Selection for Allogenic Hemopoietic Stem Cell Transplantation: Clinical and Ethical Considerations.异基因造血干细胞移植的供体选择:临床与伦理考量
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Parent versus child donor perceptions of the bone marrow donation experience.父母与儿童供者对骨髓捐献经历的看法。
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Health-Related Quality of Life among Pediatric Hematopoietic Stem Cell Donors.儿科造血干细胞捐献者的健康相关生活质量
J Pediatr. 2016 Nov;178:164-170.e1. doi: 10.1016/j.jpeds.2016.07.009. Epub 2016 Aug 10.
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Hematopoietic stem cell donation: psychological perspectives of pediatric sibling donors and their parents.造血干细胞捐献:儿科同胞捐献者及其父母的心理视角
Bone Marrow Transplant. 2015 Oct;50(10):1337-42. doi: 10.1038/bmt.2015.152. Epub 2015 Jul 6.
8
Children as hematopoietic cell donors in research: when is it approvable?儿童作为研究中的造血细胞供体:何时可获批准?
Bone Marrow Transplant. 2015 Jan;50(1):15-9. doi: 10.1038/bmt.2014.224. Epub 2014 Oct 20.
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The influence of the donor-recipient relationship on related donor reactions to stem cell donation.供体与受体关系对相关供体干细胞捐献反应的影响。
Bone Marrow Transplant. 2014 Jun;49(6):831-5. doi: 10.1038/bmt.2014.38. Epub 2014 Mar 17.
10
The policy statement of the American Academy of Pediatrics -- children as hematopoietic stem cell donors -- a proposal of modifications for application in the UK.美国儿科学会的政策声明——儿童作为造血干细胞供者——对在英国应用的修改建议。
BMC Med Ethics. 2013 Oct 31;14:43. doi: 10.1186/1472-6939-14-43.

本文引用的文献

1
Use of G-CSF in matched sibling donor pediatric allogeneic transplantation: a consensus statement from the Children's Oncology Group (COG) Transplant Discipline Committee and Pediatric Blood and Marrow Transplant Consortium (PBMTC) Executive Committee.粒细胞集落刺激因子在儿童同胞全相合供者异基因移植中的应用:儿童肿瘤协作组(COG)移植学科委员会和儿科血液与骨髓移植协会(PBMTC)执行委员会的共识声明
Pediatr Blood Cancer. 2006 Apr;46(4):414-21. doi: 10.1002/pbc.20800.
2
Brief report: Optimizing children's memory and management of an invasive medical procedure: the influence of procedural narration and distraction.简短报告:优化儿童对侵入性医疗程序的记忆及应对:程序叙述与分心的影响
J Pediatr Psychol. 2006 Jun;31(5):522-7. doi: 10.1093/jpepsy/jsj081. Epub 2005 Sep 21.
3
Commentary: preparing young children for medical procedures: taking account of memory.
J Pediatr Psychol. 2006 Sep;31(8):859-61. doi: 10.1093/jpepsy/jsj072. Epub 2005 Aug 31.
4
Sibling self-report, parental proxies, and quality of life: the importance of multiple informants for siblings of a critically ill child.兄弟姐妹的自我报告、父母代理报告与生活质量:多名信息提供者对危重症患儿兄弟姐妹的重要性。
Pediatr Hematol Oncol. 2005 Jan-Feb;22(1):25-40. doi: 10.1080/08880010590896233.
5
Safety and efficacy of allogeneic PBSC collection in normal pediatric donors: the pediatric blood and marrow transplant consortium experience (PBMTC) 1996-2003.正常儿科供体中异基因外周血干细胞采集的安全性和有效性:儿科血液和骨髓移植协会经验(PBMTC,1996 - 2003年)
Bone Marrow Transplant. 2005 Feb;35(4):361-7. doi: 10.1038/sj.bmt.1704743.
6
Risks and methods for peripheral blood progenitor cell collection in small children.
Transfus Apher Sci. 2004 Dec;31(3):221-31. doi: 10.1016/j.transci.2004.07.013.
7
Psychosocial adjustment of adolescent siblings of hematopoietic stem cell transplant patients.
J Pediatr Oncol Nurs. 2004 Jul-Aug;21(4):233-48. doi: 10.1177/1043454203262698.
8
Pediatric large-volume leukapheresis: a single institution experience with heparin versus citrate-based anticoagulant regimens.儿童大容量白细胞单采术:单机构使用肝素与枸橼酸盐抗凝方案的经验
Transfusion. 2004 Feb;44(2):229-38. doi: 10.1111/j.1537-2995.2004.00668.x.
9
Pediatric sibling donors of successful and unsuccessful hematopoietic stem cell transplants (HSCT): a qualitative study of their psychosocial experience.造血干细胞移植(HSCT)成功与失败案例中的儿科同胞捐赠者:对其心理社会经历的定性研究
J Pediatr Psychol. 2003 Jun;28(4):223-30. doi: 10.1093/jpepsy/jsg010.
10
The psychosocial aspects of donating blood stem cells: the sibling donor perspective.
J Clin Apher. 2003;18(1):1-9. doi: 10.1002/jca.10042.

单一机构中同胞干细胞供者的经历。

Sibling stem cell donor experiences at a single institution.

作者信息

Wiener Lori S, Steffen-Smith Emilie, Battles Haven B, Wayne Alan, Love Cynthia P, Fry Terry

机构信息

Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, MD, USA.

出版信息

Psychooncology. 2008 Mar;17(3):304-7. doi: 10.1002/pon.1222.

DOI:10.1002/pon.1222
PMID:17534868
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC2293127/
Abstract

Allogeneic bone marrow (BM) and cytokine mobilized peripheral blood stem cell (PBSC) transplantation can be curative for patients with malignant and nonmalignant hematologic diseases. Siblings are most often selected as a donor match; however, research on sibling donors is limited and has focused primarily on conventional BM donors. This exploratory study describes the experiences of PBSC sibling donors at a single institution. Through retrospective interviews, 14 sibling donors shared their perceived needs and concerns before and after their stem cell collection. Donors identified fears about the donation procedure, and expressed the need for more information about transplant outcome and complications. The inclusion of the sibling donors themselves, rather than the report of their parents or health-care providers and the qualitative nature of the structured design allowed sibling donors to describe their concerns and thoughts without being restrained by the beliefs of the participant's parents, researcher or sibling's medical team. Suggestions for visual educational tools, psychosocial interventions and future research are provided.

摘要

异基因骨髓(BM)和细胞因子动员的外周血干细胞(PBSC)移植对患有恶性和非恶性血液系统疾病的患者可能具有治愈作用。兄弟姐妹通常是首选的供体匹配对象;然而,关于同胞供体的研究有限,且主要集中在传统的骨髓供体上。这项探索性研究描述了一家机构中PBSC同胞供体的经历。通过回顾性访谈,14名同胞供体分享了他们在干细胞采集前后所感知到的需求和担忧。供体们指出了对捐赠程序的恐惧,并表示需要更多关于移植结果和并发症的信息。纳入同胞供体自身,而非其父母或医疗保健提供者的报告,以及结构化设计的定性性质,使得同胞供体能够描述他们的担忧和想法,而不受参与者父母、研究人员或同胞医疗团队信念的限制。本文还提供了关于视觉教育工具、心理社会干预措施及未来研究的建议。