Witkop M L, McLaughlin J M, Anderson T L, Munn J E, Lambing A, Tortella B
Northern Regional Bleeding Disorders Center, Traverse City, MI, USA.
Pfizer Inc, US Medical Affairs, Collegeville, PA, USA.
Haemophilia. 2016 Jul;22(4):e245-50. doi: 10.1111/hae.12951. Epub 2016 May 24.
Adherence to clotting-factor treatment regimens, especially among adolescents and young adults (AYAs), is under-researched.
We determined factors associated with better adherence to prophylaxis.
From April through December 2012, a convenience sample of AYA (aged 13-25 years) persons with haemophilia or von Willebrand disease (VWD) completed an online survey that assessed adherence to prescribed prophylactic treatment regimens [Validated Haemophilia Regimen Treatment Adherence Scale (VERITAS)-Pro]. Logistic regression analysis assessed demographic and clinical factors related to non-adherence (VERITAS-Pro≥57).
Seventy-three prophylactically treating AYAs participated. Of which, 88%, 8% and 4% had haemophilia A, B and VWD respectively. Almost all (90%) had severe disease and 58% had never developed an inhibitor. Most were aged 13-17 years (56%), white (78%), non-Hispanic (88%), never married (94%) and had some type of health insurance (96%). Median VERITAS-Pro score was 48 (range = 25-78) and 22 (30%) participants were non-adherent to prophylaxis (VERITAS-Pro≥57). Final logistic regression modelling suggested that, compared to those aged 13-17 years, participants aged 18-25 years were 6.2 (95% CI: 1.8-21.0; P < 0.01) times more likely to be non-adherent. Compared to respondents whose mother had at least a Bachelor's degree, respondents whose mother did not were 3.8 (95% CI: 1.0-14.3; P = 0.05) times more likely to be non-adherent.
Results suggest that adherence efforts should be especially targeted to young adults as they transition from adolescence (i.e. parental supervision) and assume primary responsibility for their bleeding disorder care. Healthcare providers should be mindful of AYAs whose mothers have less formal education and ensure that adequate time and resources are dedicated to family adherence education.
对于凝血因子治疗方案的依从性，尤其是在青少年和年轻成年人（AYA）中，研究较少。
我们确定了与更好地坚持预防治疗相关的因素。
2012年4月至12月，对患有血友病或血管性血友病（VWD）的13至25岁AYA人群进行便利抽样，完成一项在线调查，评估对规定预防治疗方案的依从性[验证的血友病方案治疗依从性量表（VERITAS）-Pro]。逻辑回归分析评估与不依从（VERITAS-Pro≥57）相关的人口统计学和临床因素。
73名接受预防性治疗的AYA参与了研究。其中，分别有88%、8%和4%患有甲型血友病、乙型血友病和血管性血友病。几乎所有患者（90%）患有严重疾病，58%从未产生抑制剂。大多数患者年龄在13至17岁（56%），白人（78%），非西班牙裔（88%），未婚（94%），并拥有某种类型的医疗保险（96%）。VERITAS-Pro评分中位数为48（范围=25-78），22名（30%）参与者未坚持预防治疗（VERITAS-Pro≥57）。最终的逻辑回归模型表明，与13至17岁的参与者相比，18至25岁的参与者不依从的可能性高6.2倍（95%置信区间：1.8-21.0；P<0.01）。与母亲至少拥有学士学位的受访者相比，母亲没有学士学位的受访者不依从的可能性高3.8倍（95%置信区间：1.0-14.3；P=0.05）。
结果表明，在年轻人从青春期过渡（即父母监督）并承担出血性疾病护理的主要责任时，应特别针对他们进行依从性方面的努力。医疗保健提供者应关注母亲受教育程度较低的AYA，并确保为家庭依从性教育投入足够的时间和资源。
