血友病专科护士对B型血友病的认识

S. Chaplin, Maj Friberg Birkedal, E. Crilly, Simon Fletcher, Sara Garcia, G. Mulders, L. Myrin-Westesson, D. Pollard, Anna Sanigorska, N. Uitslager
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引用次数: 1

摘要

一些临床医生认为B型血友病比A型血友病出血少,但与健康相关的结果似乎没有什么不同。目前的临床实践降低了出血的风险,使差异难以衡量。我们调查了血友病专科护士,以了解他们对血友病B与血友病a的影响的看法。方法在2020年7月至9月期间,邀请欧洲和加拿大护士完成一项关于血友病B管理和治疗看法的在线调查(25个问题)。37%的应答者报告血友病B的出血不同,一半以上的治疗不同。关于使用延长半衰期(EHL)产品的意见和经验各不相同。使用EHL产品的自我报告信心平均评分为7.1(范围3-10),47%的人认为这些产品在2025年仍将是最佳治疗方法。结论部分护士认为A型血友病与B型血友病的治疗方法不同。使用EHL产品的经验和信心水平的差异,以及相信这些产品在未来五年内仍将是B型血友病的最佳治疗方法,表明需要进行教育以提高信心和能力。
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Haemophilia specialist nurses’ perceptions of haemophilia B
Abstract Introduction Some clinicians believe that haemophilia B is associated with less bleeding than haemophilia A, yet there appears to be little difference in health-related outcomes. Current clinical practice reduces the risk of bleeds, making differences difficult to measure. We surveyed specialist haemophilia nurses to discern their opinions about the impact of haemophilia B compared to haemophilia A. Methods Between July and September 2020, European and Canadian nurses were invited to complete an online survey (25 questions) about perceptions of management and treatment of haemophilia B. Results Fifty-nine nurses (46 European, 13 Canadian) completed the survey. Bleeding was reported as different in haemophilia B by 37% of respondents, and treatment as different by over half. Opinions and experience around using extended half-life (EHL) products varied. Self-reported confidence in using EHL products was rated at a mean of 7.1 (range 3–10) with 47% believing these would remain the optimal treatment in 2025. Conclusion Some nurses believe haemophilia A and B are managed differently. Variations in experience and levels of confidence in the use of EHL products, combined with a belief that these products will remain an optimal treatment for haemophilia B for the next five years, indicates a need for education to promote confidence and competence.
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