Impact of thalassemia major on patients and their families.
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.
Caro
J Jaime
JJ
Caro Research Institute, Concord, MA 07142, USA. jcaro@caroresearch.org
Ward
Alexandra
A
Green
Traci Craig
TC
Huybrechts
Krista
K
Arana
Alejandro
A
Wait
Suzanne
S
Eleftheriou
Androulla
A
D000293:Adolescent; D000328:Adult; D002648:Child; D017281:Cost of Illness; D003676:Deferoxamine / Q000627:therapeutic use; D048909:Diabetes Complications; D004700:Endocrine System Diseases / Q000150:complications; D005195:Family Relations; D005260:Female; D006331:Heart Diseases / Q000150:complications; D006801:Humans; D019190:Iron Overload / Q000209:etiology / Q000517:prevention & control; D008107:Liver Diseases / Q000150:complications; D008297:Male; D011788:Quality of Life; D011795:Surveys and Questionnaires; D013959:Thyroid Diseases / Q000150:complications; D065227:Transfusion Reaction; D017086:beta-Thalassemia / Q000150:complications / Q000523:psychology* / Q000628:therapy
D003676:Deferoxamine