An international survey of patients with thalassemia major and their views about sustaining life-long desferrioxamine use

Alexandra Ward ¹ , J Jaime Caro ¹^,2 , Traci Craig Green ¹ , Krista Huybrechts ¹ , Alejandro Arana ³ , Suzanne Wait ⁴ and Androulla Eleftheriou ⁵

¹Caro Research Institute, Concord, MA, USA

²Division of General Internal Medicine, Royal Victoria Hospital, McGill University, Montréal, Canada

³Novartis Pharmaceutica, S.A., Barcelona, Spain

⁴Previously Novartis Pharma AG, Basel, Switzerland, currently Bristol-Myers Squibb, Hounslow, UK

⁵Thalassemia International Foundation, Nicosia, Cyprus

author email corresponding author email

BMC Clinical Pharmacology 2002, 2:3doi:10.1186/1472-6904-2-3


Published:	23 April 2002

Abstract

Background

Management of thalassemia major requires patients to have life-long access to a treatment regimen of regular blood transfusions coupled with iron chelation therapy. The objective of this study was to investigate patients' reasons for missing iron chelation therapy with desferrioxamine, and the support to sustain life-long adherence to treatment.

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. Most patients (1,573) used desferrioxamine, and 79% administered a dose at least 4 days a week. Inaccessibility of the drug was a common reason for missing a dose in India (51%), and in Iran (25%), whereas, in any other country, it was a reason for less than 17% of patients. Overall, 58% reported reasons for missing a dose related to their beliefs or feelings about the medication, and 42% drug-related side effects.

Conclusion

Many patients miss doses of desferrioxamine and an opportunity remains to develop interventions that provide more support to sustain use of desferrioxamine.