Oxford Haemophilia Centre and Thrombosis Centre, Churchill Hospital, Oxford, UK.
Haemophilia. 2011 Mar;17(2):173-8. doi: 10.1111/j.1365-2516.2010.02418.x. Epub 2010 Nov 11.
Bleeding episodes in patients with inhibitors can be challenging to treat. Clinical guidelines recognize the importance of early treatment, ideally within 2 h of the onset of bleeding. On-demand haemophilia care at home has been shown to reduce the time between recognition of the symptoms of bleeding and initiation of treatment. Rapid resolution of bleeding is associated with longer-term benefits for the patient. Effective haemophilia care at home depends on patients and carers taking greater responsibility for treatment; however, many find this difficult. Education can help raise awareness of haemophilia treatment at home and provide helpful information for patients/carers. The haemophilia nurse has a key role in providing this support and education. This review discusses a number of recent guidelines and educational materials for haemophilia home care identified during a literature survey. The survey shows that most materials were not validated. In addition, the survey shows limited effectiveness data on techniques for training haemophilia patients about home care. Further education resources and research in the treatment of haemophilia at home are required.
出血发作在抑制剂患者中可能具有挑战性。临床指南认识到早期治疗的重要性,理想情况下应在出血发作后 2 小时内进行治疗。按需在家庭中提供血友病护理已被证明可以减少从识别出血症状到开始治疗的时间。出血的快速缓解与患者的长期益处相关。有效的家庭血友病护理取决于患者和护理人员承担更多的治疗责任;然而,许多人发现这很困难。教育可以帮助提高对家庭血友病治疗的认识,并为患者/护理人员提供有用的信息。血友病护士在提供这种支持和教育方面发挥着关键作用。这篇综述讨论了在文献调查中确定的一些最近的血友病家庭护理指南和教育材料。调查显示,大多数材料都没有经过验证。此外,调查显示关于培训血友病患者进行家庭护理的技术的有效性数据有限。需要进一步的教育资源和家庭治疗血友病的研究。