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The Thalassemia Channel on VJHemOnc is an independent medical education platform, supported with funding from Agios (Gold). Supporters have no influence on the production of content. The levels of sponsorship listed are reflective of the amount of funding given.
EHA 2025 | Understanding the unmet needs in thalassemia: a survey by the Thalassemia Advocacy Advisory Council
In this interview, Maria Domenica Cappellini, MD, University of Milan, Milan, Italy, introduces the Thalassemia Advocacy Advisory Council and explains the global patient survey being conducted to understand health literacy among patients with thalassemia. Prof. Cappellini emphasizes the importance of combining patient and physician perspectives to identify unmet needs in the thalassemia community and determine effective ways to address them. This interview took place at the 30th Congress of the European Hematology Association (EHA) in Milan, Italy.
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Transcript
First of all, let me explain what the Thalassemia Advocacy Advisory Council is. It is a group of multi-stakeholder, international, combining patients and physicians with a novel approach to find out the unmet needs in the thalassemia community in order to find out the way to improve it. As I say, it’s an international group and the added value is the combination of patients and physicians...
First of all, let me explain what the Thalassemia Advocacy Advisory Council is. It is a group of multi-stakeholder, international, combining patients and physicians with a novel approach to find out the unmet needs in the thalassemia community in order to find out the way to improve it. As I say, it’s an international group and the added value is the combination of patients and physicians. We discussed together the unmet needs and from a preliminary discussion among us, it came out that health literacy is one of the priorities and based on that we found out four topics within this area. How to break barriers that patients find on several occasions, either in treatment or in relation with physicians. Knowledge, so how to deal with the knowledge about the disease. So we found out four topics and based on that we drew a survey form which has been now distributed by different agencies in different countries all over the world to collect the results of the survey and see how using those results we may improve the intervention. The survey is ongoing so we don’t have the results yet. We hope for the next meeting to be able to provide that. But what I want to stress is that it was extremely important in this preliminary phase to combine this dialogue between physicians and patients from different countries.
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