title: Predictors of non-adherence to prescribed prophylactic clotting-factor treatment regimens among adolescent and young adults with a bleeding disorder.
abstract: BACKGROUND
  Adherence to clotting-factor treatment regimens, especially among adolescents and young adults (AYAs), is under-researched.
  
  
  OBJECTIVE
  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.
authors.affiliation: Northern Regional Bleeding Disorders Center, Traverse City, MI, USA.
authors.forename: M L
authors.initials: ML
authors.lastname: Witkop
authors.affiliation: Pfizer Inc, US Medical Affairs, Collegeville, PA, USA.
authors.forename: J M
authors.initials: JM
authors.lastname: McLaughlin
authors.affiliation: Pfizer Inc, US Medical Affairs, Collegeville, PA, USA.
authors.forename: T L
authors.initials: TL
authors.lastname: Anderson
authors.affiliation: University of Michigan Haemophilia Treatment Center, Ann Arbor, MI, USA.
authors.forename: J E
authors.initials: JE
authors.lastname: Munn
authors.affiliation: Henry Ford Adult Haemophilia & Thrombosis Treatment Center, Detroit, MI, USA.
authors.forename: A
authors.initials: A
authors.lastname: Lambing
authors.affiliation: Pfizer Inc, US Medical Affairs, Collegeville, PA, USA.
authors.forename: B
authors.initials: B
authors.lastname: Tortella
mesh_terms: D000293:Adolescent; D000328:Adult; D057134:Antibodies, Neutralizing / Q000097:blood; D001779:Blood Coagulation Factors / Q000627:therapeutic use*; D005260:Female; D006467:Hemophilia A / Q000188:drug therapy* / Q000473:pathology; D002836:Hemophilia B / Q000188:drug therapy* / Q000473:pathology; D006801:Humans; D007348:Insurance, Health; D020407:Internet; D016015:Logistic Models; D008297:Male; D055118:Medication Adherence / Q000208:ethnology; D016017:Odds Ratio; D011788:Quality of Life; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D044465:White People; D055815:Young Adult; D014842:von Willebrand Diseases / Q000188:drug therapy* / Q000473:pathology
chemical_list: D057134:Antibodies, Neutralizing; D001779:Blood Coagulation Factors
keywords: adherence; adolescents; predictors; prophylaxis/prophylactic; young adult