Giangrande Paul, Calizzani Gabriele, Menichini Ivana, Candura Fabio, Mannucci Pier Mannuccio, Makris Michael
Oxford University Hospitals NHS Trust, Oxford, United Kingdom European Haemophilia Consortium, Bruxelles, Belgium.
European Haemophilia Consortium, Bruxelles, Belgium National Blood Centre, National Institute of Health, Rome, Italy.
Blood Transfus. 2014 Apr;12 Suppl 3(Suppl 3):s525-30. doi: 10.2450/2014.0056-14s.
The European haemophilia community of professionals and patients has agreed on the principles of haemophilia care to address comprehensive optimal delivery of care which is nowadays scattered throughout Europe. Many of the health facilities call themselves Haemophilia Centres despite their variation in size, expertise and services provided. Only a small number of countries have Haemophilia Centre accreditation systems in place.
In the framework of the European Haemophilia Network project, following an inclusive process of stakeholder involvement, the European Guidelines for the certification of haemophilia centres have been developed in order to set quality standards for European Haemophilia Centres and criteria for their certification.
The Guidelines define the standards and criteria for the designation of two levels of care delivery: European Haemophilia Treatment Centres, providing local routine care, and European Haemophilia Comprehensive Care Centres, providing specialised and multi-disciplinary care and functioning as tertiary referral centres. Additionally, they define standards about general requirements, patient care, provision of an advisory service and establishment of network of clinical and specialised services.
The implementation of the European Guidelines for the certification of Haemophilia Centres will contribute to the reduction of health inequalities through the standardisation of quality of care in European Union Member States and could represent a model to be taken into consideration for other rare disease groups.
欧洲血友病专业人士和患者群体已就血友病护理原则达成一致,以解决目前在欧洲各地分散的全面优质护理提供问题。许多医疗机构自称血友病中心,尽管它们在规模、专业知识和提供的服务方面存在差异。只有少数国家建立了血友病中心认证体系。
在欧洲血友病网络项目框架内,经过利益相关者广泛参与的过程,制定了欧洲血友病中心认证指南,以便为欧洲血友病中心设定质量标准及其认证标准。
该指南定义了两个护理级别指定的标准和标准:提供当地常规护理的欧洲血友病治疗中心,以及提供专业和多学科护理并作为三级转诊中心运作的欧洲血友病综合护理中心。此外,它们还定义了关于一般要求、患者护理、提供咨询服务以及建立临床和专业服务网络的标准。
欧洲血友病中心认证指南的实施将通过欧盟成员国护理质量的标准化,有助于减少健康不平等现象,并可能成为其他罕见病群体可考虑的模式。