Impact of thalassemia major on patients and their families

被引:47
作者
Caro, JJ
Ward, A
Greene, TC
Huybrechts, K
Arana, A
Wait, S
Eleftheriou, A
机构
[1] Caro Res, Concord, MA USA
[2] McGill Univ, Royal Victoria Hosp, Div Gen Internal Med, Montreal, PQ H3A 1A1, Canada
[3] Novartis Farmaceut SA, Barcelona, Spain
[4] Novartis Pharma AG, Basel, Switzerland
[5] Thalassemia Int Fdn, Nicosia, Cyprus
关键词
thalassemia major; desferrioxamine; quality of life; burden of illness; treatment; complications; international survey;
D O I
10.1159/000057633
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
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 (C) 2002 S. Karger AG, Basel.
引用
收藏
页码:150 / 157
页数:8
相关论文
共 15 条
[1]  
BASRAN R, 1994, BLOOD S, V94, pA261
[2]   Survival and disease complications in thalassemia major [J].
Borgna-Pignatti, C ;
Rugolotto, S ;
De Stefano, P ;
Piga, A ;
Di Gregorio, F ;
Gamberini, MR ;
Sabato, V ;
Melevendi, C ;
Cappellini, MD ;
Verlato, G .
COOLEYS ANEMIA: SEVENTH SYMPOSIUM, 1998, 850 :227-231
[3]  
CAO A, 1997, MANAGMENT PROTOCOL T
[4]  
Ehlers K H, 1980, Ann N Y Acad Sci, V344, P397
[5]  
Gamberini MR, 1998, J PEDIATR ENDOCR MET, V11, P867
[6]   THE EFFECT OF SUBCUTANEOUS DEFEROXAMINE ON THE CARDIAC PROFILE OF THALASSEMIA MAJOR - A 5-YEAR STUDY [J].
GIARDINA, PJV ;
EHLERS, KH ;
ENGLE, MA ;
GRADY, RW ;
HILGARTNER, MW .
ANNALS OF THE NEW YORK ACADEMY OF SCIENCES, 1985, 445 (JUN) :282-292
[7]  
HUSSAIN MAM, 1976, LANCET, V2, P1278
[8]  
Loukopoulos D, 1996, SEMIN HEMATOL, V33, P76
[9]  
Low LCK, 1997, J PEDIATR ENDOCR MET, V10, P175
[10]  
MODEL B, 1994, GUIDELINES CONTROL H