Predictors of non-adherence to prescribed prophylactic clotting-factor treatment regimens among adolescent and young adults with a bleeding disorder

Introduction Adherence to clotting-factor treatment regimens, especially among adolescents and young adults (AYAs), is under-researched. Aim We determined factors associated with better adherence to prophylaxis. Methods 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). Results 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. Conclusions 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.