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TIF STUDY | Patient and Caregiver Perceptions of Thalassaemia Care in 2023

A study led by the Thalassaemia International Federation (TIF) in 2023 aimed to understand the experiences and perceptions of thalassaemia care among patients and caregivers in different countries. The findings, published in Medicina, represent one of the first international surveys targeting this specific population.

The study revealed that most patients with thalassaemia are receiving adequate treatment, including regular blood transfusions, chelation therapy, proper monitoring, and suitable imaging. Out of 2082 participants, 79.5% began transfusion therapy between ages 1 and 4, with only 4.8% starting after age 10. For iron chelation therapy, 42.7% started between ages 1 and 4, while 17.3% began after age 10.

Regarding blood supply delays at treatment centres, 42.3% of respondents reported no delays, while 47.0% experienced occasional delays. Satisfaction with healthcare services was notable, with around half of the patients expressing they were very satisfied (11%) or satisfied (38%). However, about a third reported dissatisfaction with the quality of care.

Access to treatment was also a critical concern; one-third cited difficulty or severe difficulty in accessing treatment due to high costs and travel expenses. Similarly, more than half of the patients reported that they were missing 10 days or more per year from school or work to receive treatment (11 to 15 days, 18.7%; 16 or more days, 37.6%).

Additionally, distinct disparities emerged among WHO regions in various parameters such as mean age distribution, marital and employment status, educational attainment, and access to health services.

“Despite demonstrating improvements in many areas of social parameters and the medical management of thalassaemia patients compared to previous reports, the findings of the current survey document significantly fewer benefits, primarily in the area of prevention,” the authors concluded in their report.

 

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