Impact of thalassemia major on patients and their families.
Caro JJ, Ward A, Green TC, Huybrechts K, Arana A, Wait S, Eleftheriou A.
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
Publication Types:
PMID: 11978936 [PubMed - indexed for MEDLINE]