Assessment of Clinical Characteristics and Sociocontextual Factors on Medication Adherence in Children and Adolescents With Hemophilia

ABSTRACT Introduction Sociocontextual factors, including social determinants of health (SDOH), affect health outcomes and clinical progression in chronic blood diseases such as hemophilia. Continuous prophylaxis with intravenous clotting factor concentrates or subcutaneous factor VIII mimetic agents reduces bleeding and improves quality of life. However, adherence to prophylaxis is challenging. Aim To investigate the impact of clinical and sociocontextual factors, including SDOH, on adherence to prophylaxis in children and adolescents with hemophilia. Methods In this cross‐sectional study, parent and adolescent participants were enrolled from 2018 to 2023. Adherence to prophylaxis was measured by Hemophilia Regimen Treatment Adherence Scale‐Prophylaxis as overall adherence as well as “time,” “dose,” “plan,” “remember,” “skip,” and “communicate” subscales. Sociocontextual factors were assessed by self‐reported validated surveys. Linear regression analysis was performed. Results Of 41 parent participants, 56% were Hispanic. There was no difference in adherence scores between Hispanic and non‐Hispanic parents ( p = 0.97). Older age of child ( p = 0.002), prophylaxis via peripheral intravenous route (vs. central line, p = 0.004), and use of Spanish language for medical communication (vs. English, p = 0.002) were associated with lower adherence. Higher trust in provider was associated with higher adherence ( p = 0.051). Conclusion Our findings may help guide tailored interventions to improve adherence, including targeting older children/adolescents as they become independent in their care, language‐concordant education, and measures to improve social support and enhance trust in healthcare providers.