巴西血友病患者的公共卫生援助 (PATCH研究):一个横截面研究协议
Maria do Rosário Ferraz Roberti1,2,3, Yasmin Ricarda E Azevedo Géa1, Isadora Almeida Marinho1
1Federal University of Goiás, Faculty of Medicine, Goiânia, GO, Brazil.
BMJ open
|November 21, 2025
概括
这项研究评估了巴西血液中心.
科学领域:
- 血友病护理 血友病护理
- 血液中心的血液中心.
- 公共卫生 公共卫生
背景情况:
- 血友病是一种罕见的遗传性出血障碍,需要复杂的支持和昂贵的治疗.
- 血友病 (PwH) 患者的综合护理需要结构化和持续评估的治疗中心.
- 巴西血友病患者公共援助项目 (PATCH项目) 旨在评估巴西血液中心 (BC) 提供血友病护理.
研究的目的:
- 评估参与血友病护理的巴西血液中心 (BC) 的基础设施,人力资源和医疗保健提供流程.
- 根据国家和国际建议,建立血友病护理的质量标准.
- 确定巴西各地提供血友病护理的改进领域.
主要方法:
- 全国范围的横截面研究涉及整个巴西的公元前98年.
- 自主管理的基于国家和国际建议的结构化问卷.
- 使用世界血友病联合会和欧洲血友病和相关疾病协会的标准进行质量评估.
主要成果:
- 从全国98个巴西血液中心收集数据.
- 结构化问卷评估基础设施,人力资源和医疗保健提供流程.
- 由领先的血友病组织定义的质量标准.
结论:
- 该PATCH项目提供了对巴西血友病护理的全面评估.
- 调查结果将为改善血友病患者护理质量和可获得性的策略提供信息.
- 通过出版物和会议传播结果将促进血友病管理的进步.
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