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农村地区造血干细胞移植受者获得医疗保健的障碍:医疗服务提供者的观点

Barriers to accessing health care for hematopoietic cell transplantation recipients living in rural areas: perspectives from healthcare providers.

作者信息

Moore Heather K, Santibañez Martha E Burton, Denzen Ellen M, Carr Diane W, Murphy Elizabeth A

机构信息

National Marrow Donor Program, USA.

出版信息

Clin J Oncol Nurs. 2013 Aug 1;17(4):405-11. doi: 10.1188/13.CJON.405-411.

DOI:10.1188/13.CJON.405-411
PMID:23899979
Abstract

Hematopoietic cell transplantation (HCT) is a curative therapy for patients with malignant and nonmalignant bone marrow disorders. Life after transplantation can vary significantly among HCT recipients, who deal with a variety of physical and emotional issues. This presents numerous challenges, particularly for rural recipients who are required to travel long distances to access specialized HCT care. The objective of this study was to better understand barriers to providing care for HCT recipients living in rural areas. This study uses a cross-sectional design to collect primary data via an Internet survey of HCT healthcare providers. The authors analyzed factors restricting post-HCT care and whether having standard post-transplantation care instructions influenced the resources provided to distant-to-care recipients. Respondents reported limited transportation, coordination of care, and distance to facility as major barriers to post-HCT care, regardless of the number of distant-to-care recipients treated annually. HCT centers with standard post-transplantation care instructions were more likely to provide visits from social workers and medical leave resources to distant-to-care recipients. These instructions may improve recipient and local provider ability to make informed decisions regarding post-HCT care. The findings will help guide the development of programs and resources targeted to recipients of HCT who are distant to care.

摘要

造血细胞移植(HCT)是治疗恶性和非恶性骨髓疾病患者的一种治愈性疗法。移植后的生活在HCT受者中差异很大,他们要应对各种身体和情感问题。这带来了诸多挑战,尤其是对于那些需要长途跋涉才能获得专业HCT护理的农村受者。本研究的目的是更好地了解为居住在农村地区的HCT受者提供护理的障碍。本研究采用横断面设计,通过对HCT医疗服务提供者进行互联网调查来收集原始数据。作者分析了限制HCT后护理的因素,以及是否有标准的移植后护理指导对为距离护理机构较远的受者提供的资源产生影响。无论每年治疗的距离护理机构较远的受者数量如何,受访者均报告交通不便、护理协调以及距离医疗机构较远是HCT后护理的主要障碍。拥有标准移植后护理指导的HCT中心更有可能为距离护理机构较远的受者提供社会工作者的探访和病假资源。这些指导可能会提高受者和当地医疗服务提供者就HCT后护理做出明智决策的能力。研究结果将有助于指导针对距离护理机构较远的HCT受者制定相关项目和资源。

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引用本文的文献

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Patient housing barriers to hematopoietic cell transplantation: results from a mixed-methods study of transplant center social workers.造血细胞移植患者的住房障碍:移植中心社会工作者的混合方法研究结果
Support Care Cancer. 2016 Mar;24(3):1167-74. doi: 10.1007/s00520-015-2872-9. Epub 2015 Aug 15.
2
The Value of Patient Reported Outcomes and Other Patient-Generated Health Data in Clinical Hematology.患者报告结局及其他患者生成的健康数据在临床血液学中的价值
Curr Hematol Malig Rep. 2015 Sep;10(3):213-24. doi: 10.1007/s11899-015-0261-6.