Berntorp Erik, Hart Daniel, Mancuso Maria Elisa, d'Oiron Roseline, Perry David, O'Mahony Brian, Kaczmarek Radoslaw, Crato Miguel, Pasi John, Miners Alec, Carlsson Katarina Steen, Kitchen Steve, Boehlen Françoise, Giangrande Paul, Cebura Elizabete, Uitslager Nanda, Osooli Mehdi, Janeckova Daniela, Haldon Rosie, Rivolta Gianna Franca
Skåne University Hospital, Lund University, Malmö, Sweden.
Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK.
Eur J Haematol. 2016 Jul;97 Suppl 83:3-18. doi: 10.1111/ejh.12760.
Haemophilia remains a complex disorder to diagnose and manage, requiring close cooperation between multidisciplinary healthcare professionals. There are still many unmet challenges in haemophilia care. The first Team Haemophilia Education (THE) meeting, held on 7-8 May 2015 in Amsterdam, The Netherlands, aimed to promote the optimal care of haemophilia patients through education of the multidisciplinary treatment team. This was achieved by reviewing the latest developments in haemophilia management, considering how these can be implemented in the clinic to improve patient care and providing a platform for networking and debate for all haemophilia treatment team members. Haemophilia treatment centres from several countries were asked to complete a premeeting online questionnaire to establish the biggest challenges that they face when managing patients. The concerns expressed were used to develop the agenda, which comprised a combination of formal presentations, case studies and informal workshops covering such topics as pharmacokinetics, laboratory assays and tailoring of treatment to individual patients. This report is a summary of the key developments in haemophilia care presented by various investigators and healthcare professionals at THE meeting 2015.
血友病仍然是一种诊断和管理都很复杂的疾病，需要多学科医疗专业人员之间密切合作。血友病护理方面仍存在许多未得到满足的挑战。2015年5月7日至8日在荷兰阿姆斯特丹举行的首届血友病教育团队（THE）会议，旨在通过对多学科治疗团队进行教育，促进对血友病患者的最佳护理。这是通过回顾血友病管理的最新进展、考虑如何在临床中实施这些进展以改善患者护理，并为所有血友病治疗团队成员提供一个交流和辩论的平台来实现的。来自几个国家的血友病治疗中心被要求完成一份会前在线问卷，以确定他们在管理患者时面临的最大挑战。所表达的关切被用于制定议程，议程包括正式演讲、案例研究和非正式研讨会的组合，涵盖药代动力学、实验室检测以及针对个体患者的治疗调整等主题。本报告是对2015年THE会议上各位研究者和医疗专业人员所介绍的血友病护理关键进展的总结。
