Children's National Hospital, Washington, DC, USA.
John Hunter Children's Hospital, New Lambton Heights, NSW, Australia.
Haemophilia. 2021 Feb;27 Suppl 3:82-86. doi: 10.1111/hae.14019. Epub 2020 May 29.
Over the last several decades, the increasing focus on women with inherited bleeding disorders (WBD) has brought more patients into Haemophilia Treatment Centres (HTC) around the world. These women present with unique challenges including a significant risk of heavy menstrual bleeding (HMB). The influx of a new patient group has necessitated expansion of the services provided by the multi-disciplinary team in HTCs. Nurses already play a central role in patient and family education within the HTC. As such, they are well positioned to participate in the development of adaptations within the HTC infrastructure to provide clinical care and education specifically for WBD. The nursing experts in HTCs should play an active role in outreach as well as providing education to WBD. Despite this supposition, review of the growing body of literature surrounding the topic of WBD is notable for a paucity of literature highlighting the role of the HTC nurse and potential impact on this, relatively new, but steadily increasing, patient population.
在过去的几十年中，对遗传性出血性疾病（WBD）女性的日益关注使世界各地更多的患者进入了血友病治疗中心（HTC）。这些女性带来了独特的挑战，包括大量月经出血（HMB）的风险。新患者群体的涌入需要扩大 HTC 中多学科团队提供的服务。护士已经在 HTC 中的患者和家庭教育中发挥了核心作用。因此，他们非常适合参与 HTC 基础设施的调整，以提供专门针对 WBD 的临床护理和教育。HTC 中的护理专家应在宣传方面发挥积极作用，并为 WBD 提供教育。尽管有这种假设，但对围绕 WBD 主题的不断增长的文献的审查表明，很少有文献强调 HTC 护士的作用及其对这一相对较新但不断增加的患者群体的潜在影响。
