A comparative analysis across the globe: blood transfusion therapy in thalassaemia major

Abstract

The major arms of the clinical management of thalassaemia major include life‐long regular blood transfusion and iron chelation therapy – essential to address the consequences of the genetic defect, mainly the severe anaemia and the bone marrow hyperactivity. Effective blood transfusion therapy requires adequate and safe blood. However, the standards for both blood screening and blood transfusion practices vary depending on the geographical area, from country to country and even within the same country, between different regions and medical centres. The Thalassaemia International Federation (TIF), a patients’ parents‐driven organization with 98 member thalassaemia or thalassaemia‐related associations from 60 countries around the world, was established in 1987 with the mission to promote the quality of medical care and its access to every patient with thalassaemia across the world. An important activity contributing towards the fulfilment of its goals has been the establishment of an educational programme, in collaboration with the World Health Organization, with which in official relations since 1996. The educational programme that now enjoys international recognition focuses on providing awareness to the community at large and information and training to patients/parents and health professionals, and includes (i) preparation, publication, translation and distribution of educational books, leaflets and other material, (ii) the organization of local, national, regional and international conferences, workshops, seminars and field trips. In the context of TIF's educational programme, a survey has been conducted covering a period of 2 years, the aim of which was to evaluate the effectiveness of blood transfusion therapy in patients with thalassaemia major, in a number of affected countries around the world.