Discussion
Data collected as part of our QI initiative show that children and AYAs face a wide range of barriers to anticoagulation adherence. For patients prescribed an oral anticoagulant, the most frequently endorsed barriers included forgetting to take the medication, medication side effects, and alteration of lifestyle required secondary to taking the medication. For patients prescribed an injectable anticoagulant, the most common barriers included medication side effects, alteration of lifestyle required secondary to taking the medication, and pain. Of note, caregivers and patients reported different top barriers and when both completed measures (in the 31 dyads), 55% of the barriers endorsed differed across reporters. These data highlight the importance of assessing the barriers perceived by all stakeholders involved in adherence management, as perceptions of barriers and their impact on adherence behavior may vary across individuals.
Consistent with studies from other pediatric medical populations, a greater number of barriers was associated with lower adherence per patient- and caregiver-report.16-18 While results are limited by the lack of demographic and clinical data, missing data, lack of objective adherence measurement, and single site design inherent in the collection of data as part of a QI initiative, they suggest that targeting barriers may be a promising avenue for improving adherence in children and young adults prescribed anticoagulants. Critical next steps include standardizing and optimizing adherence measurement and developing and evaluating interventions for this population.
Conflict of Interest Statement: The authors have no conflicts of interest associated with this publication, and there has been no significant financial support for this work that could have influenced its outcome.