Caro 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. Copyright 2002 S. Karger AG, Basel