Challenge
Individuals living with transfusion-dependent β-thalassemia in Greece shoulder a significant daily physical and psychological burden related to frequent blood transfusions and complex treatment regimens. Understanding their care preferences is essential to developing patient-centered treatment options and improving quality of life.
Ambition
This research sought to systematically evaluate the care delivery priorities and therapeutic preferences of individuals living with transfusion-dependent β-thalassemia in Greece as well as inform clinical and health policy decision-making by aligning treatment models to patient needs.
Action
In collaboration with patient organizations, our team designed and implemented a comprehensive survey that captured current physical and psychological health, transfusion-related burden, and decision-making criteria for potential novel therapies. Trade-off scenarios were integrated to evaluate patients’ willingness to accept potential risks or side effects of innovative treatments.
Results
Out of the total number of surveyed individuals:
Impact
Our survey provides invaluable, actionable insights for healthcare providers and policymakers in Greece. By reflecting the real-world preferences of β-thalassemia patients, these results guide the planning of innovative and patient-centered care models that may improve treatment satisfaction, resource optimization, and overall health outcomes.
