Miesbach W, Kalnins W
Haemophilia Centre, Goethe University Hospital, Medical Clinic II, Institute of Transfusion Medicine, Frankfurt am Main, Germany.
Deutsche Hämophilie Gesellschaft (DHG), Hamburg, Germany.
Haemophilia. 2016 Sep;22(5):e367-74. doi: 10.1111/hae.13003. Epub 2016 Jun 28.
Adherence to prophylactic treatment in haemophilia is important for patient outcome.
This study analysed the influence of potential impact factors on adherence assessed through the application of the German translation of the VERITAS-Pro questionnaire.
All members of the German haemophilia patient organisation (DHG) who suffer from severe or moderate haemophilia and are on continuous prophylactic treatment were asked to complete the VERITAS-Pro questionnaire. Further questions were added regarding the patients' age, severity of haemophilia, type A or B, frequency of prophylaxis, pain level, factor application self or non-self and co-morbidities.
Responses of 397 patients on continuous prophylactic treatment, 0-80 years old, were analysed according to several age groups: 0-14, 15-19, 20-59 (20-29 and 30-39) and ≥60 years of age. The mean total VERITAS-Pro score for the whole sample was 36.7 ± 11.7 (range of 24-86). The scores were significantly higher, indicating the poorest adherence, in patients between 20 and 59 years of age (41.1 ± 11.7) compared with the other age groups (30.0-35.7). Adherence to treatment was highest in patients between 0 and 14 years of age in all subscales of the VERITAS-Pro. The following potential risk factors for non-adherence were evaluated in all age groups: organisation suffering (care by a haemophilia centre), severity and type of haemophilia, factor concentrate administration and the presence of co-morbidities.
The identification of significant differences between age groups in special subscales of adherence and impact factors offers tailored starting points for improvements of adherence to prophylactic treatment.
坚持血友病预防性治疗对患者预后很重要。
本研究通过应用VERITAS-Pro问卷的德语翻译版,分析了潜在影响因素对依从性的影响。
要求德国血友病患者组织(DHG)中所有患有重度或中度血友病且正在接受持续预防性治疗的成员完成VERITAS-Pro问卷。还增加了关于患者年龄、血友病严重程度、A型或B型、预防频率、疼痛程度、因子应用是自我给药还是他人给药以及合并症的进一步问题。
对397名年龄在0至80岁之间接受持续预防性治疗的患者的回答,按照几个年龄组进行了分析:0至14岁、15至19岁、20至59岁(20至29岁和30至39岁)以及60岁及以上。整个样本的VERITAS-Pro总平均分是36.7±11.7(范围为24至86)。与其他年龄组(30.0至35.7)相比,20至59岁的患者得分显著更高,表明依从性最差。在VERITAS-Pro的所有子量表中,0至14岁患者的治疗依从性最高。在所有年龄组中评估了以下不依从的潜在风险因素:组织痛苦(由血友病中心护理)、血友病的严重程度和类型、凝血因子浓缩物的给药以及合并症的存在。
在依从性和影响因素的特殊子量表中确定年龄组之间的显著差异,为改善预防性治疗的依从性提供了有针对性的切入点。