Leebeek Frank W G, Fischer Kathelijn
Erasmus University Medical Centre, Rotterdam, the Netherlands.
Van Creveldkliniek, University Medical Centre Utrecht, Utrecht, the Netherlands Julius Center for Health Sciences and Primary Care, University Medical Centre Utrecht, Utrecht, the Netherlands.
Blood Transfus. 2014 Apr;12 Suppl 3(Suppl 3):s501-4. doi: 10.2450/2014.0041-14s.
In the Netherlands, the first formal haemophilia comprehensive care centre was established in 1964, and Dutch haemophilia doctors have been organised since 1972. Although several steps were taken to centralise haemophilia care and maintain quality of care, treatment was still delivered in many hospitals, and formal criteria for haemophilia treatment centres as well as a national haemophilia registry were lacking.
In collaboration with patients and other stakeholders, Dutch haemophilia doctors have undertaken a formal process to draft new quality standards for the haemophilia treatment centres. First a project group including doctors, nurses, patients and the institute for harmonisation of quality standards undertook a literature study on quality standards and performed explorative visits to several haemophilia treatment centres in the Netherlands. Afterwards concept standards were defined and validated in two treatment centres. Next, the concept standards were evaluated by haemophilia doctors, patients, health insurance representatives and regulators. Finally, the final version of the standards of care was approved by Central body of Experts on quality standards in clinical care and the Dutch Ministry of Health.
A team of expert auditors have been trained and, together with an independent auditor, will perform audits in haemophilia centres applying for formal certification. Concomitantly, a national registry for haemophilia and allied disorders is being set up.
It is expected that these processes will lead to further concentration and improved quality of haemophilia care in the Netherlands.
在荷兰，首个正式的血友病综合护理中心于1964年成立，荷兰的血友病医生自1972年起开始组织起来。尽管采取了若干措施来集中血友病护理并维持护理质量，但许多医院仍在提供治疗，且缺乏血友病治疗中心的正式标准以及全国血友病登记系统。
荷兰血友病医生与患者及其他利益相关者合作，开展了一个正式流程来起草血友病治疗中心的新质量标准。首先，一个包括医生、护士、患者以及质量标准协调机构的项目组对质量标准进行了文献研究，并对荷兰的几家血友病治疗中心进行了探索性访问。之后在两个治疗中心定义并验证了概念标准。接下来，由血友病医生、患者、医疗保险代表和监管机构对概念标准进行评估。最后，护理标准的最终版本由临床护理质量标准中央专家机构和荷兰卫生部批准。
一组专家审核员已经接受培训，并将与一名独立审核员一起对申请正式认证的血友病中心进行审核。与此同时，正在建立一个全国血友病及相关疾病登记系统。
预计这些流程将促使荷兰的血友病护理进一步集中并提高质量。
