增强在不必要的出血障碍患者的护理证据社区社区
1Department of Molecular Medicine and Haematology, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.
概括
血友病治疗的重大进展还没有达到罕见的出血障碍 (RBD),低收入和中低收入国家 (LMICs) 的人口以及患有遗传出血障碍 (WGWBD) 的妇女和女孩. 缩小这些差距需要更好的诊断,研究和公平的护理策略.
科学领域:
- 血液学 血液学 血液学
- 全球卫生平等全球卫生平等
- 罕见疾病 罕见疾病
背景情况:
- 血友病护理仍然存在显著的差异,不成比例地影响罕见出血障碍 (RBDs) 患者,低收入和中低收入国家 (LMICs) 患者以及遗传出血障碍 (WGWBD) 的妇女和女孩.
- 这些服务不足的人群在诊断,治疗和参与研究方面面临着重大劣势.
- 血友病管理方面的进步在全球范围内没有得到公平的分配.
研究的目的:
- 批判性地评估有关这些代表性不足的群体在遗传性出血障碍中的现有证据基础.
- 识别他们护理中的持久的知识和实施差距.
- 为加强诊断能力,研究基础设施和公平的医疗保健提供提出战略优先事项.
主要方法:
- 进行了全面的文献审查,分析了2018年至2025年间发表的研究.
- 搜索的数据库包括PubMed,Scopus和谷歌学者.
- 审查的重点是流行病学,诊断途径,临床结果,治疗可访问性和罕见出血障碍的干预有效性,LMIC人口和WGWBD.
主要成果:
- 在LMICs中,大约75%的遗传性出血障碍患者仍未被诊断出来,往往面临数十年的诊断延迟.
- 罕见的出血障碍 (RBD),占出血障碍的3-5%,缺乏足够的自然史数据和比较有效性研究.
- 患有遗传性出血障碍 (WGWBD) 的妇女和女孩经历了8年的中位数诊断延迟,严重的月经出血影响了55-74%,严重影响了生活质量.
结论:
- 加强诊断系统和扩大统一的注册表对于改善护理至关重要.
- 推进实施研究和优先考虑以公平为导向的战略对于解决关键证据缺口至关重要.
- 战略干预措施,包括培训和选举措,是有前途的,但需要强有力的证据来证明长期的可持续性和成本效益.
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