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ASH 2025 | Understanding health literacy among patients with thalassemia: Thalassemia Advocacy Advisory Council
In this video, Maria Domenica Cappellini, MD, University of Milan, Milan, Italy, discusses the results of a global patient survey conducted by the Thalassemia Advocacy Advisory Council, which aimed to understand health literacy among patients with thalassemia. Prof. Cappellini highlights that the survey revealed a significant lack of awareness among patients regarding the impact of chronic anemia and its associated morbidities, and emphasizes the need to revisit treatment approaches and increase patient knowledge. This interview took place at the 67th ASH Annual Meeting and Exposition, held in Orlando, FL.
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Transcript
We established an advocacy advisory group council, just to try to identify the unmet needs in thalassemia. This AAC is actually very interesting because it’s a combination of different competencies. It includes a couple of physicians, Dr Sujit Sheth and Mike Who, who is going to present today the results. But the most important thing is to have patients, representatives of associations, nurses, different stakeholders in the thalassemia field...
We established an advocacy advisory group council, just to try to identify the unmet needs in thalassemia. This AAC is actually very interesting because it’s a combination of different competencies. It includes a couple of physicians, Dr Sujit Sheth and Mike Who, who is going to present today the results. But the most important thing is to have patients, representatives of associations, nurses, different stakeholders in the thalassemia field. And so, sharing a different point of view and different experiences, I think that we have been able to identify the real unmet needs, which are often underestimated.
First of all, what we did was to discuss among us what the main unmet needs are, and then we planned a survey whose results will be presented today in a poster. A survey in order to collect information on different items, which I’m not going to list here, but asking how patients perceive, what is the perception of the disease, what are their knowledges, who are the people they trust more. And for some, they are physicians, for some, they are nurses. So, there are different approaches to the treatment of the disease by the patients. One of the important outcomes of the survey is that we realized that most of the patients are not really aware of the importance of chronic anemia causing morbidities. So, patients don’t realize that having a hemoglobin level less than 10, 8/9 long-term is responsible for severe morbidities, any kind of morbidity, iron overload, endocrine dysfunction, liver disease. So, they don’t really have this concept, and I think we need to work on that. Most of the patients with this hemoglobin level are non-transfusion dependent. So, according to the results of the survey, I think that we need to revisit the treatment. We need to approach those patients, increase their knowledge, and we need to design a better and proper treatment for them.
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