Abstract
BACKGROUND: Health literacy can influence self-management, leading to improved health outcomes in pediatric patients with venous thrombotic events (VTEs). OBJECTIVES: To assess general health literacy in adolescents and parents/caregivers of children diagnosed with VTE, and their perception and satisfaction with overall thrombosis-related knowledge, thrombosis knowledge compared to that of other conditions, and beliefs regarding thrombosis knowledge importance. METHODS: Patients aged 10 to 18 years with VTE history and parents/caregivers of patients aged 0 to 18 years with VTE attending clinic were recruited in this cross-sectional study. Health literacy was measured using the Rapid Estimate of Literacy in Medicine Short Forms (Adolescent and Adult), the Health Literacy Assessment Scale for Adolescents, and the e-Health Literacy Scale. Self-reported perception, satisfaction, comparative knowledge, and beliefs regarding thrombosis knowledge were assessed using researcher-generated questions. RESULTS: In total, 101 participants (50 adolescents, 51 parents/caregivers) were recruited at a median of 27 months (25th-75th percentile; 12-62 months) post-VTE diagnosis. Overall, 74% of adolescents and 59% of parents/caregivers had ≥1 measure indicating low general health literacy. Only half the participants thought their thrombosis knowledge was similar to that of other diseases. Satisfaction with thrombosis-related knowledge was 44%; 96% agreed that learning about thrombosis was important. Adolescents reported higher satisfaction with their knowledge than parents/caregivers, but satisfaction was not associated with demonstrated thrombosis knowledge. CONCLUSION: Most participants had low general health literacy levels, and more than half were not satisfied with their thrombosis-related knowledge. Adolescents tended to overestimate their knowledge. Effective strategies to support health literacy in this population are needed.