Impact of Thalassemia major on Patients and Their Families

Abstract

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.

Can the Availability of Unrestricted Financial Support Improve the Quality of Care of Thalassemics in a Center with Limited Resources? A Single Center Study from India

“…There is very little published work on evaluation of HRQoL in Indian thalassemics either as a part of an international study 18 or as a sin- gle center evaluation 19,20 especially from eastern India. 21 In our study, the overall SF 36 v2 scores obtained were somewhat lower in both the physical component scale as well as the mental component scale for Jeevan Asha and Control patients as compared to the general population.…”

Iron Overload and Iron Chelation Therapy in Pediatric Patients

“…62 The demanding therapeutic regimen of deferoxamine can also reduce quality of life; over 50% of patients with thalassemia have said that deferoxamine often or very often disrupts or prevents their activities, and 65% of patients have admitted to disliking the treatment. 63 By comparison, 80% of patients with SCD and 93% of patients with thalassemia found deferasirox to be more convenient than deferoxamine, with a greater proportion of patients reporting satisfaction with deferasirox. 64,65 Data comparing compliance between the thrice-daily oral chelator deferiprone with deferoxamine in patients with thalassemia have shown median improvements in compliance of 11.4% from baseline with deferiprone and declines of 4.3% from baseline with deferoxamine.…”

Decision-making in adult thalassemia patients undergoing unrelated bone marrow transplantation: quality of life, communication and ethical issues

“…6 A number of studies have directly focused on the QoL of patients with a diagnosis of cancer undergoing BMT or thalassemia major patients treated with regular blood transfusion and iron-chelation therapy. [9][10][11][12][13][14][15][16] However, no studies have been performed on the QoL of patients transplanted for thalassemia and no data exist on their 'return to normal' following BMT. The mean global QoL in our patient cohort was good (mean 76.4) and 63% of patients enjoyed a very good QoL.…”