Faculty of Pharmaceutical Sciences, University of British Columbia, Vancouver, BC, Canada.
Haemophilia. 2014 Jan;20(1):39-43. doi: 10.1111/hae.12235. Epub 2013 Aug 6.
Severe haemophilia is often managed by prophylactic factor infusions in developed countries. The benefits of secondary prophylaxis in adults are currently being studied and adherence to the prescribed prophylactic factor regimen is vital to decreasing bleeding episodes. The aim of this study was to measure discrepancy between the physicians' prescription for prophylactic factor usage, and the actual factor usage obtained through infusion logs. During this method subjects with severe haemophilia A or B (FVIII or FIX ≤2%), from a single haemophilia clinic with complete medical and infusion records from July 01, 2009 to June 30, 2011, were evaluated. Continuous prophylaxis ≥4 weeks were included in the analysis. A scoring system for adherence to prescribed dosing and frequency was developed. A global scale of adherence was performed by two independent nurses using visual analogue scale. Thirty-one subjects, all with haemophilia A, with a median age of 26 years (range 18-56) were included. Results showed that the median (IQR) adherence rate to prescribed frequency and dosage, respectively, was 76% (67;85) and 93% (73;97). In multivariate analysis, only the length of time on prophylaxis during the study period showed a positive correlation with adherence whereas age, number of co-infections, number of bleeds and number of joints with chronic arthropathy did not. Global nursing assessments were in general agreement with the score. In conclusion, we observed a moderately good level of adherence based on score and by the nurse global assessment. Better adherence was found in subjects with longer exposure to prophylaxis.
在发达国家，严重血友病通常通过预防性输注因子进行治疗。目前正在研究成人二级预防的益处，遵守规定的预防性因子治疗方案对于减少出血发作至关重要。本研究旨在测量医生处方预防性因子使用与通过输注记录实际获得的因子使用之间的差异。在这项研究中，从 2009 年 7 月 1 日至 2011 年 6 月 30 日，对来自单个血友病诊所的具有严重血友病 A 或 B（FVIII 或 FIX ≤2%）的单一性别受试者进行了评估。分析中纳入了连续预防性治疗≥4 周的受试者。制定了一个用于评估剂量和频率的依从性评分系统。两名独立护士使用视觉模拟量表对规定剂量和频率的依从性进行了全球评估。共纳入 31 名受试者，均为血友病 A 患者，中位年龄为 26 岁（范围 18-56 岁）。结果显示，分别按照规定频率和剂量的依从中位数（IQR）为 76%（67；85）和 93%（73；97）。多变量分析显示，只有研究期间预防性治疗的时间长度与依从性呈正相关，而年龄、合并感染次数、出血次数和慢性关节炎关节数与依从性无关。总体而言，护理评估与评分一致。总之，我们观察到根据评分和护士的总体评估，依从性处于中等水平。暴露于预防性治疗时间更长的受试者的依从性更好。
