Barriers to compliance with prophylaxis therapy in haemophilia
Barriers to compliance with prophylaxis therapy in haemophilia
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DOI：
10.1046/j.1365-2516.2001.00534.x
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发表时间：
2001-07-01
期刊：
影响因子：
3.9
通讯作者：
Manco-Johnson, M
中科院分区：
文献类型：
--
作者：
Hacker, MR;Geraghty, S;Manco-Johnson, M
对于重度血友病患者，预防性治疗或常规输注凝血因子浓缩物的做法是一项要求很高的医疗方案。预防性输注需要定期直接静脉穿刺或无菌进入中心静脉接入装置。进行了电话调查，以了解预防依从性障碍的相关信息。山区国家地区血友病和血栓形成中心建议预防52例男性血友病A或B。血友病护士尝试联系所有这些患者或其父母，并与其中38人（73.1%）取得联系。受访者被问及以下问题：他们开始预防的决定;他们的自我评价的依从性;预防的挑战，障碍和促进因素;以及他们对治疗的感知价值。4例患者（10.5%）选择不开始预防治疗。在开始预防的34人中，20名受访者（58.8%）将其依从性评为优秀。近三分之一的家庭具有良好的依从性（给予75 - 100%的处方输注）表示，预防的耗时性是该方案的最大挑战。此外，58.3%的家庭，给予少于规定的输液次数报告说，时间承诺是错过输液的主要原因。44.1%的家庭认为预防的好处是主要的促进因素。97%的受访者认为预防非常有价值。这些数据表明，尽管预防的已知益处，但它是一种要求苛刻的医疗方案，并且依从性不完善。此外，这项研究强调了为正在实施预防的患者和家庭提供持续支持和教育的重要性。
Prophylaxis, or the practice of routine replacement infusions of clotting factor concentrate in persons with severe haemophilia, is a demanding medical regimen. Prophylactic infusions require direct venepuncture or sterile entry into a central venous access device on a regular basis. A telephone survey was conducted to elicit information regarding the barriers to compliance with prophylaxis. The Mountain States Regional Haemophilia and Thrombosis Center has recommended prophylaxis to 52 male patients with haemophilia A or B. The haemophilia nurse attempted to contact all of these patients or their parents, and contact was made with 38 (73.1%) of them. Respondents were asked about the following issues: their decision to initiate prophylaxis; their self-rated compliance; the challenges, barriers, and facilitators of prophylaxis; and their perceived value of the therapy. Four patients (10.5%) elected not to begin prophylaxis. Of the 34 persons who began prophylaxis, 20 respondents (58.8%) rated their compliance as excellent. Nearly one-third of the families with excellent compliance (giving 75-100% of prescribed infusions) stated that the time-consuming nature of prophylaxis was the most significant challenge of the regimen. In addition, 58.3% of the families that gave less than the prescribed number of infusions reported that the time commitment was the primary reason for missing infusions. Knowledge of the benefits of prophylaxis was the primary facilitator of compliance for 44.1% of families. Ninety-seven percent of respondents rated prophylaxis as very valuable. These data show that despite the known benefits of prophylaxis, it is a demanding medical regimen, and compliance is imperfect. In addition, this study underscores the importance of providing continuing support and education for patients and families who are implementing prophylaxis.