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Updated: Jul 12, 2025

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Live-cell Imaging of Platelet Degranulation and Secretion Under Flow
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对于·维勒布兰德病,血小板功能障碍和罕见出血障碍的患者相关健康结果:德尔菲研究
Evelien S van Hoorn1, Hester F Lingsma1, Marjon H Cnossen2
1Department of Public Health, Erasmus University Medical Center Rotterdam, Rotterdam, The Netherlands.
Research and practice in thrombosis and haemostasis
|October 19, 2023
概括
患有遗传性出血障碍的患者优先考虑出血发作,月经影响和日常生活影响等结果. 医疗保健专业人员专注于治疗,关节健康和疼痛管理,以获得更好的基于价值的护理.
科学领域:
- 血液学 血液学 血液学
- 患者报告的结果
- 基于价值的医疗保健
背景情况:
- 评估患者价值需要测量对患者重要的结果.
- 对于患有自体遗传性出血障碍的患者来说,关键的健康结果尚未明确.
研究的目的:
- 确定和优先考虑对患者,护理人员和参与自体遗传出血疾病的医疗保健专业人员具有重要意义的健康结果.
- 为这些疾病实施基于价值的医疗保健策略提供信息.
主要方法:
- 一个涉及两个小组的Delphi过程:患者/护理人员和医疗保健专业人员.
- 文献审查以确定146种潜在的健康结果.
- 三轮评价结果的重要性,使用5分利克尔特级别和共识标准 (中位数为5,IQR ≤1).
主要成果:
- 在与出血发作,危及生命的并发症以及月经强度/影响有关的结果上达成共识.
- 患者和护理人员强调了有关月经和日常生活影响的结果.
- 医疗保健专业人员优先考虑治疗,关节健康和疼痛管理结果.
结论:
- 这项研究确定了患有自体遗传出血障碍的患者的关键健康结果.
- 这些发现对于开发和实施针对这一患者群体量身定制的基于价值的医疗保健方法至关重要.
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