1. ¹Unità Operativa Centro Trapianti di Midollo Osseo, P.O. 'R. Binaghi', Cagliari, Italy
2. ²Servizio di Medicina Legale, Università di Cagliari, Italy
3. ³Dipartimento di Scienze Biomediche e Biotecnologie, Centro Trapianti di Midollo Osseo, Università di Cagliari, Italy
4. ⁴Unità Operativa di Ematologia, Centro Trapianti di Midollo Osseo, Ospedale San Salvatore, Pesaro, Italy
5. ⁵Oncoematologia Pediatrica, IRCCS Policlinico San Matteo, Pavia, Italy

Correspondence: Dr G Caocci, Centro Trapianti di Midollo Osseo, P.O. 'R. Binaghi', Via Is Guadazzonis, 3, 09126 Cagliari, Italy. E-mail: gcaocci@alice.it

Received 5 September 2005; Revised 17 October 2005; Accepted 19 October 2005; Published online 21 November 2005.

Abstract

Bone marrow transplantation (BMT) represents a potentially curative treatment of thalassemia. For patients without an HLA-identical sibling donor, recourse to an unrelated donor is a practicable option but the candidates and their families are faced with a difficult decision. They can either choose to continue the supportive therapy, with no chance of definitive cure, or they accept the mortality risk of BMT in the hope of obtaining a definitive resolution of the disease. We investigated the communication strategies and the post transplantation quality of life (QoL) in 19 adult thalassemia patients surviving after an unrelated donor BMT. The patients were given two questionnaires: a questionnaire to evaluate pre-transplantation communication factors and the EORTC QLQ-C30 questionnaire to assess global QoL. All patients were satisfied with the communication modalities employed by the physicians. The global post transplantation QoL in our patient cohort was found to be good. The approach used in this study may offer a contribution to understanding the decision-making process leading to the choice of a treatment with a high mortality risk for a chronic, non-malignant disease. Finally, some ethical issues of this therapeutic approach are briefly addressed.