title: Decision-making in adult thalassemia patients undergoing unrelated bone marrow transplantation: quality of life, communication and ethical issues.
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.
authors.affiliation: Unità Operativa Centro Trapianti di Midollo Osseo, P.O. R. Binaghi, Cagliari, Italy. gcaocci@alice.it
authors.forename: G
authors.initials: G
authors.lastname: Caocci
authors.forename: S
authors.initials: S
authors.lastname: Pisu
authors.forename: F
authors.initials: F
authors.lastname: Argiolu
authors.forename: C
authors.initials: C
authors.lastname: Giardini
authors.forename: F
authors.initials: F
authors.lastname: Locatelli
authors.forename: A
authors.initials: A
authors.lastname: Vacca
authors.forename: M G
authors.initials: MG
authors.lastname: Orofino
authors.forename: E
authors.initials: E
authors.lastname: Piras
authors.forename: P
authors.initials: P
authors.lastname: De Stefano
authors.forename: M C
authors.initials: MC
authors.lastname: Addari
authors.forename: A
authors.initials: A
authors.lastname: Ledda
authors.forename: G
authors.initials: G
authors.lastname: La Nasa
mesh_terms: D000293:Adolescent; D000328:Adult; D016026:Bone Marrow Transplantation / Q000941:ethics / Q000401:mortality; D002755:Choice Behavior / Q000941:ethics; D046148:Donor Selection / Q000941:ethics / Q000379:methods; D005260:Female; D006801:Humans; D019520:Living Donors / Q000941:ethics; D008297:Male; D010817:Physician-Patient Relations / Q000941:ethics; D011788:Quality of Life; D018570:Risk Assessment / Q000941:ethics; D011795:Surveys and Questionnaires; D013789:Thalassemia / Q000401:mortality / Q000628:therapy*