Thornburg Courtney D, Duncan Natalie A
Hemophilia and Thrombosis Treatment Center, Rady Children's Hospital, San Diego, CA.
Indiana Hemophilia and Thrombosis Center, Indianapolis, IN, USA.
Patient Prefer Adherence. 2017 Sep 27;11:1677-1686. doi: 10.2147/PPA.S139851. eCollection 2017.
Prophylactic clotting-factor regimens reduce the occurrence of bleeding episodes and maintain joint health in individuals with moderate and severe hemophilia. However, these outcomes are only achieved with adherence to prescribed prophylaxis regimens. There are several types of barriers to adherence related to key patient, condition, treatment, health-care system, and/or socioeconomic variables. Notably, health-care professionals may not prescribe prophylaxis if they perceive that a patient will be nonadherent. Prophylactic treatment strategies should be developed with the patient and family, focused on individualized treatment goals. Personalized strategies are needed to reinforce the importance of and encourage confidence in administering the regular infusions required for prophylactic therapy. These strategies may include verbal and written information delivered by health-care professionals, peers, and inter-active media. The advent of extended half-life clotting factors requiring less frequent infusion may improve adherence.
预防性凝血因子方案可减少中重度血友病患者出血事件的发生，并维持关节健康。然而，只有坚持规定的预防方案才能取得这些效果。与关键的患者、病情、治疗、医疗保健系统和/或社会经济变量相关的依从性存在多种障碍。值得注意的是，如果医护人员认为患者不会依从，他们可能不会开出预防用药。应与患者及其家人共同制定预防性治疗策略，重点是个性化的治疗目标。需要个性化策略来强化预防性治疗所需定期输注的重要性，并鼓励对其的信心。这些策略可能包括医护人员、同伴和互动媒体提供的口头和书面信息。需要更不频繁输注的延长半衰期凝血因子的出现可能会提高依从性。
