Global Patient Survey on Thalassemia Health Literacy

This technical report presents the quantitative results from a global patient survey conducted by the Thalassemia Advocacy Advisory Council (AAC) to assess health literacy among patients with thalassemia. The survey, which included 122 participants from various countries, aimed to gather insights into patients' understanding of their condition and the sources of information they rely on for managing their health. Participants were predominantly adults aged 25-44 years diagnosed with β-thalassemia. The report outlines the survey methodology, including recruitment and data collection processes, and highlights key findings regarding patients' confidence in their disease knowledge, their awareness of potential complications, and their understanding of necessary monitoring practices. Despite high reported confidence levels, significant knowledge gaps were identified, particularly concerning hemoglobin levels associated with complications. The report concludes with recommendations for improving patient education and addressing these gaps to enhance overall health outcomes for thalassemia patients.