在·维勒布兰德病中以患者为中心的护理:我们还在那里吗?
Grace H Tang1, Jecko Thachil2, Mackenzie Bowman3
1Hematology-Oncology Clinical Research Group, St. Michael's Hospital, Toronto, Ontario, Canada.
Expert review of hematology
|August 15, 2023
概括
·威尔布兰德病 (VWD) 是一种常见的遗传性出血障碍,经常被误诊,导致护理延迟. 患有VWD的女性面临着严重的性别差异,原因是症状被忽视,及时治疗的机会有限.
科学领域:
- 血液学 血液学 血液学
- 遗传学 是一个遗传学.
- 公共卫生 公共卫生
背景情况:
- ·威尔布兰德病 (VWD) 是最常见的遗传性出血障碍.
- 患有VWD的患者经常经历诊断延迟和误诊.
- 存在性别特定的健康差异,由于阴道出血的污名化,尤其影响女性.
研究的目的:
- 描述VWD护理的现状,重点关注以患者为中心的原则.
- 为了识别及时诊断和高质量护理的障碍,为个人与VWD.
- 突出这些障碍对妇女和低收入和中等收入国家的妇女造成的不成比例影响.
主要方法:
- 审查目前的VWD护理实践.
- 分析诊断和患者护理方面的挑战.
- 强调以患者为中心的护理要素:尊重偏好,价值观和需求.
主要成果:
- 诊断的延迟,错误地识别出血症状,以及症状的驳回是重要的障碍.
- 患有VWD的女性受到这些挑战的影响不成比例.
- 在低收入和中等收入国家,护理差异加剧.
结论:
- 协调的多学科护理,患者教育和自我倡导对于改善VWD管理至关重要.
- 迫切需要高质量的研究来解决现有的护理差距.
- 系统性变化,包括资源投资和研究资金,对于有效的,以患者为中心的VWD护理至关重要.
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