Long-term health-related quality of life evaluated more than 20 years after BMT

This study of patients who have gone through successful BMT or HSCT shows that cured patients have a good quality of life, similar to non-thals.

http://www.ncbi.nlm.nih.gov/pubmed/23958950

Blood. 2013 Sep 26;122(13):2262-70. doi: 10.1182/blood-2013-05-502658. Epub 2013 Aug 19.
Long-term health-related quality of life evaluated more than 20 years after hematopoietic stem cell transplantation for thalassemia.
La Nasa G1, Caocci G, Efficace F, Dessì C, Vacca A, Piras E, Sanna M, Marcias M, Littera R, Carcassi C, Lucarelli G.
Author information
Abstract
The principal aim of our study was to investigate whether patients transplanted more than 20 years ago for β-thalassemia major had a different health-related quality of life (HRQoL) compared with the general population. The Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36) and the Functional Assessment of Cancer Therapy-Bone Marrow Transplant (FACT-BMT) were received from 109 ex-thalassemia patients who underwent hematopoietic stem cell transplantation (HSCT) during the 1980s and 1990s. Adjusted comparisons were performed separately for patient age at HSCT and the presence or absence of graft-versus-host disease (GVHD). Sociodemographic and clinical variables were also analyzed. The median age of our cohort at HSCT and the time of the survey was 12 years (range, 1-36) and 34 years (range, 21-48), respectively, with a median follow-up age of 22.8 years (range, 11.7-30.3). Statistical analysis of data collected more than 20 years after HSCT showed that the long-term HRQoL of ex-thalassemia patients was very similar to that of the general population. Clinical meaningful differences were only found for the general health (GH) scale (-8.9; 95% CI, -15.0 to 2.7, P = .005). Mental health, education level, employment status, marital status, living arrangements, and birth rate were compatible with normal living patterns. The development of GVHD and older age at transplantation were important impairing factors. Additional analyses performed to evaluate HRQoL in an age-sex-matched cohort of 124 patients receiving conventional treatment of β-thalassemia revealed poorer outcomes compared with the cohort of transplanted patients.

PMID: 23958950 [PubMed - indexed for MEDLINE]

this is so great to know Andy.  thanks for sharing!

Really good to know that thals (after several years of BMT) were leading near normal lives!! Thanks Andy for sharing.

Thank you for sharing, Andy. I'm very interested in learning more about BMT and how it can benefit me. Is it a possiblity that I can look forward to? I know I am older than the average patient that usually undergoes this type of therapy but I am open to learning more. As you know (via Facebook), I've been having complications with blood transfusions recently as my hemoglobin does not stabilize-- even for a week. As always, I'm very thankful for any input you may have!

I would suggest talking to Dr Walters at Oakland about BMT and if it is appropriate in adults. If you like, I can send you his email address. You might also want to consider watching the current gene trials and if things are looking good for the patients currently enrolled, you might want to see if you can get into the trials. We expect an annual update in the next few months.