Van Creveldkliniek, University Medical Center Utrecht, University Utrecht, Utrecht, The Netherlands.
Irish Centre for Vascular Biology, School of Pharmacy and Biomedical Sciences, RCSI, Dublin and National Coagulation Centre, St. James' Hospital, Dublin, Ireland.
Haemophilia. 2021 Sep;27(5):837-847. doi: 10.1111/hae.14379. Epub 2021 Aug 3.
Despite increasing awareness of issues faced by women and girls with inherited BDs (WGBD), standards of care are lacking, with disparities in diagnosis and treatment for WGBD across Europe. We aimed to develop practical principles of care (PoC) to promote standardization of care for WGBD within European Haemophilia Treatment and Comprehensive Care Centres (HTC/CCCs).
The co-creation process, supported by the European Association for Haemophilia and Allied Disorders, consisted of four multidisciplinary meetings with health care providers (HCPs) experienced in WGBD care, and European Haemophilia Consortium representatives, combined with broad patient and HCP consultations in the European haemophilia community. Relevant medical societies outside Europe were contacted for confirmation.
We developed ten PoC for WGBD, stressing the importance and benefits of a centralized, multidisciplinary, comprehensive, family-centred approach to support and manage WGBD during all life stages. These PoC emphasise the right to equitable access and quality of care for all people with BDs, irrespective of gender. Multiple medical societies outside Europe also confirmed their support for endorsement.
Ten PoC for WGBD evolved from an iterative process among stakeholders, supported by relevant medical societies worldwide. These PoC can serve as a benchmark for diagnosis and comprehensive multidisciplinary management of WGBD, and improve awareness of their unique challenges. They offer a framework to guide HTC/CCCs in providing equitable care for all WGBD, both in their own services and in other healthcare settings. Implementation of these principles aims to positively impact the health, wellbeing and quality of life for WGBD.
尽管人们越来越意识到遗传性血液疾病女性和女孩（WGBD）面临的问题，但仍缺乏护理标准，欧洲各地对 WGBD 的诊断和治疗存在差异。我们旨在制定护理实践原则（PoC），以促进欧洲血友病治疗和综合护理中心（HTC/CCC）内对 WGBD 的护理标准化。
该合作创造过程由欧洲血友病和相关疾病协会提供支持，包括与具有 WGBD 护理经验的医疗保健提供者（HCP）和欧洲血友病联盟代表进行了四次多学科会议，同时在欧洲血友病社区中进行了广泛的患者和 HCP 咨询。联系了欧洲以外的相关医学协会以获得确认。
我们为 WGBD 制定了十个 PoC，强调了集中、多学科、全面、以家庭为中心的方法的重要性和益处，以支持和管理所有生命阶段的 WGBD。这些 PoC 强调了所有 BDs 患者享有平等获得护理和高质量护理的权利，无论其性别如何。欧洲以外的多个医学协会也确认支持认可这些原则。
十个 WGBD 的 PoC 是利益相关者之间通过迭代过程制定的，得到了全球相关医学协会的支持。这些 PoC 可以作为诊断和 WGBD 综合多学科管理的基准，并提高对其独特挑战的认识。它们为 HTC/CCC 提供了一个框架，以在其自身服务和其他医疗保健环境中为所有 WGBD 提供公平的护理。这些原则的实施旨在积极影响 WGBD 的健康、福祉和生活质量。
