Impact of thalassemia major on patients and their families
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Published on: September 6, 2017
J Jaime Caro1, Alexandra Ward, Traci Craig Green
1Caro Research Institute, Concord, MA 07142, USA. jcaro@caroresearch.org
Objective:
To describe the burden of thalassemia major and its treatment, in terms of prevalence of iron-overload-related complications, direct and indirect costs, and the patient's physical and social well-being.
Methods:
From October 1999 to May 2000 a survey of patients with thalassemia major was conducted in ten countries: Cyprus, Egypt, Greece, Hong Kong, India, Iran, Italy, Jordan, Taiwan, and the United States.
Results:
1,888 questionnaires (65%) were returned. The responses suggest that nowadays patients begin blood transfusions, and most use desferrioxamine (84.8%), but iron-related complications, including life-threatening ones such as heart disease, are still common.
Conclusions:
There remains a need to improve the management of thalassemia, as many patients with iron-related complications experience physical and social limitations.
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