title: An international survey of patients with thalassemia major and their views about sustaining life-long desferrioxamine use.
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.
  
  
  CONCLUSIONS
  Many patients miss doses of desferrioxamine and an opportunity remains to develop interventions that provide more support to sustain use of desferrioxamine.
authors.affiliation: Caro Research Institute, Concord, MA, USA. alexward@caroresearch.com
authors.forename: Alexandra
authors.initials: A
authors.lastname: Ward
authors.forename: J Jaime
authors.initials: JJ
authors.lastname: Caro
authors.forename: Traci Craig
authors.initials: TC
authors.lastname: Green
authors.forename: Krista
authors.initials: K
authors.lastname: Huybrechts
authors.forename: Alejandro
authors.initials: A
authors.lastname: Arana
authors.forename: Suzanne
authors.initials: S
authors.lastname: Wait
authors.forename: Androulla
authors.initials: A
authors.lastname: Eleftheriou
mesh_terms: D015913:Chelation Therapy; D003676:Deferoxamine / Q000627:therapeutic use*; D019538:Health Care Surveys; D006801:Humans; D007502:Iron Chelating Agents / Q000627:therapeutic use*; D010349:Patient Compliance; D011788:Quality of Life; D011795:Surveys and Questionnaires; D017086:beta-Thalassemia / Q000188:drug therapy*
chemical_list: D007502:Iron Chelating Agents; D003676:Deferoxamine