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.
This is a preview of subscription content, access via your institution
Access options
Subscribe to this journal
Receive 12 print issues and online access
$259.00 per year
only $21.58 per issue
Rent or buy this article
Prices vary by article type
from$1.95
to$39.95
Prices may be subject to local taxes which are calculated during checkout
Similar content being viewed by others
References
Atkin K, Ahmad W . Living a ‘normal life’: young people coping with thalassemia major or sickle cell disorder. Soc Sci Med 2001; 53: 615–626.
La Nasa G, Giardini C, Argiolu F, Locatelli F, Arras M, De Stefano P et al. Unrelated donor bone marrow transplantation for thalassemia: the effect of extended haplotypes. Blood 2002; 99: 4350–4356.
La Nasa G, Caocci G, Argiolu F, Giardini C, Locatelli F, Vacca A et al. Unrelated donor bone marrow transplantation in adult patients with thalassemia. Bone Marrow Transplant 2005; 36: 971–976.
Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ et al. For the European Organization for Research and Treatment of Cancer. Study Group on Quality of Life. The EORTC QLQ-30: a quality of life instrument for use in international trials in oncology. J Natl Cancer Inst 1993; 85: 365–376.
Schofield PE, Butow PN, Thompson JF, Tattersall MHN, Beeney LJ, Dunn SM . Psychological responses of patients receiving a diagnosis of cancer. Ann Oncol 2003; 14: 48–56.
Sardell AN, Trierweiler SJ . Disclosing the cancer diagnosis. Procedures that influence patient hopefulness. Cancer 1997; 72: 3355–3365.
Ptacek JT, Eberhardt TL . The patient–physician relationship. Breaking bad news: a review of the literature. JAMA 1996; 276: 492–496.
Rutter DR, Iconomou G, Quine L . Doctor–patient communication and outcome in cancer patients: an intervention. Psych Health 1996; 12: 57–71.
Epstein JB, Phillips N, Parry J, Epstein MS, Nevill T, Stevenson-Moore P . Quality of life, taste, olfactory and oral function following high-dose of chemotherapy and allogeneic hematopoietic cell transplantation. Bone Marrow Transplant 2002; 30: 785–792.
Worel N, Biener D, Kalhs P, Mitterbauer M, Keil F, Schulenburg A et al. Long-term outcome and quality of life of patients who are alive and in complete remission more than two years after allogeneic and syngenic transplantation. Bone Marrow Transplant 2002; 30: 619–626.
Caro J, Ward A, Craig Green T, Huybrechts K, Arana A, Wait S et al. Impact of Thalassemia major on patients and their families. Acta Haematol 2002; 107: 150–157.
Arboretti R, Tognoni G, Alberti D . Pharmacosurveillance and quality of care of thalassaemic patients. Eur J Clin Pharmacol 2001; 56: 915–922.
Hjermstad MJ, Holte H, Evensen SA, Fayers PM, Kaasa S . Do patients who are treated with stem cell transplantation have a health-related quality of life comparable to the general population after 1 year? Bone Marrow Transplant 1999; 24: 911–918.
Hjermstad MJ, Loge JH, Evensen SA, Kvaloy SO, Fayers PM, Kaasa S . The course of anxiety and depression during the first year after allogenic or autologous stem cell transplantation. Bone Marrow Transplant 1999; 24: 1219–1228.
Zittoun R, Suciu S, Watson M, Solbu G, Muus P, Mandelli F et al. Quality of life in patients with acute myelogenous leukemia in prolonged first complete remission after bone marrow transplantation (allogeneic or autologous) or chemotherapy: a cross-sectional study of the EORTC-GIMEMA AML 8A trial. Bone Marrow Transplant 1997; 20: 307–315.
Sutherland HJ, Fyles GM, Adams G, Hao Y, Lipton JH, Minden MD et al. Quality of life following bone marrow transplantation: a comparison of patient reports with population norms. Bone Marrow Transplant 1997; 19: 1129–1136.
Zecca M, Prete A, Rondelli R, Lanino E, Balduzzi A, Messina C et al. Chronic graft-versus-host disease in children: incidence, risk factors, and impact on outcome. Blood 2002; 100: 1192–1200.
Beauchamp TL, Childress JF (eds). Principles of Biomedical Ethics. Oxford University Press: New York, NY, 1994, 190 pp.
Pellegrino E . Humanistic base for professional ethics in medicine. New York State J Med 1997; 77: 1456–1462.
Engel E . The clinical application of the biopsychosocial model. Am J Psychiatry 1980; 137: 535–544.
Acknowledgements
We thank Dr Roberto Dell'Oro, Professor of Bioethics at Loyola Marymount University in Los Angeles, for his precious comments and critical revision of the manuscript. We thank Anna Maria Koopmans for her assistance in preparing the manuscript.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Caocci, G., Pisu, S., Argiolu, F. et al. Decision-making in adult thalassemia patients undergoing unrelated bone marrow transplantation: quality of life, communication and ethical issues. Bone Marrow Transplant 37, 165–169 (2006). https://doi.org/10.1038/sj.bmt.1705236
Received:
Revised:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1038/sj.bmt.1705236
Keywords
This article is cited by
-
Patient-reported cognitive function among hematopoietic stem cell transplant and cellular therapy patients: a scoping review
Quality of Life Research (2023)
-
Long-term health-related quality of life in patients with β-thalassemia after unrelated hematopoietic stem cell transplantation
Bone Marrow Transplantation (2022)
-
Return to normal life after hematopoietic stem cell transplantation for thalassemia: a study of patients transplanted from matched sibling donors
Bone Marrow Transplantation (2016)
-
Reassessing the approach to informed consent: the case of unrelated hematopoietic stem cell transplantation in adult thalassemia patients
Philosophy, Ethics, and Humanities in Medicine (2014)
-
Quality of life in patients before and after haematopoietic stem cell transplantation measured with the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Core Questionnaire QLQ-C30
Bone Marrow Transplantation (2012)