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

G. Caocci, S. Pisu, F. Argiolu, C. Giardini, Franco Locatelli, A. Vacca, M. G. Orofino, E. Piras, P. De Stefano, M. C. Addari, A. Ledda, G. La Nasa

Risultato della ricerca: Contributo in rivistaArticolo in rivista

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 satisified 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.
Lingua originaleEnglish
pagine (da-a)165-169
Numero di pagine4
RivistaBone Marrow Transplantation
Volume37
DOI
Stato di pubblicazionePubblicato - 2006

Keywords

  • thalassemia
  • quality of life
  • unrelated donor bone marrow transplantation

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