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成人血友病患者的健康教育和赋权。

Health education and empowerment in adult patients with haemophilia.

机构信息

Department of Physical Medicine and Rehabilitation, La Paz University Hospital-IdiPaz, Madrid, Spain.

Department of Orthopaedic Surgery, La Paz University Hospital-IdiPaz, Madrid, Spain.

出版信息

Expert Rev Hematol. 2019 Nov;12(11):989-995. doi: 10.1080/17474086.2019.1650640. Epub 2019 Aug 8.

Abstract

: The purpose of this study is to evaluate the degree of education and empowerment of the patients of the Haemophilia Unit at 'La Paz' University Hospital (Madrid, Spain).: Haemophilic patients attending routine haemophilia consultations were asked to complete a questionnaire with a view to determining the patient´s perceived knowledge about the disease; their ability to make individual and group decisions; and whether the frequency of their hospital visits could be reduced.: Patients were shown to have ample knowledge about the disease. Knowledge had been acquired chiefly through personal experience and from the interaction with healthcare providers. Nearly 70% of patients felt capable of making decisions on matters affecting their health. Over half of the patients considered that their hospital visits could be reduced if they had more information. Patients experiencing the largest number of bleeding episodes were those showing the highest levels of empowerment. Over half the patients were satisfied with the institutional support they received.: These patients with haemophilia are in general reasonably empowered on account of their personal experiences and their interaction with the healthcare providers. Current widespread access to information makes it easier to step up educational interventions in patients at lower haemorrhagic risk.

摘要

: 本研究旨在评估西班牙马德里“拉·帕兹”大学医院血友病中心患者的受教育程度和赋权程度。: 参加常规血友病咨询的血友病患者被要求填写一份问卷,以确定患者对疾病的认知程度;他们做出个人和群体决策的能力;以及是否可以减少他们的医院就诊次数。: 患者对疾病有充分的了解。知识主要是通过个人经验和与医疗保健提供者的互动获得的。近 70%的患者认为自己有能力就影响其健康的问题做出决策。超过一半的患者认为,如果他们获得更多信息,他们的就诊次数可以减少。出血事件发生次数最多的患者表现出最高的赋权水平。超过一半的患者对他们所获得的机构支持感到满意。: 这些血友病患者通常通过个人经验和与医疗保健提供者的互动而获得相当程度的赋权。目前广泛获得信息使得更容易加强对出血风险较低的患者的教育干预。

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