Transplantation: What Do Your Patients Hear?

To a patient with bone marrow failure bone marrow failure: A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be… , their doctor’s declaration that a transplant might be an option for them and should be considered, can be heard many ways. Although stem cell transplants can be indicated in certain circumstances across BMFD, the prevalence of transplant is relatively rare. When physicians bring up the topic of transplant in relation to severe aplastic anemia aplastic anemia: (ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most… , PNH, or MDS, patients can misinterpret the suggestion as meaning that there are no other viable options. In fact, transplant can be a good option for the right candidate, and physicians who place the suggestion of a transplant in context of other options can mitigate the chance that patients will jump to the wrong conclusion.

Patients in a recent AA&MDSIF study spoke about transplants in relation to PNH. Twenty years ago, transplant in a patient without a matched donor was considered ‘high risk’, and only a few institutions would perform the procedure. One patient was told in 1985 he would have a 10-20% chance of pulling though since transplants science was in its infancy. In 2012, according to another patient, the presentation of transplant to patients is not altogether different, even though the science has advanced. One recipient of a successful transplant in 2012 described the procedure as ‘risky’ based on what she read and what multiple doctors told her. She describes the decision to pursue transplant as ‘agonizing’, because she had begun to fail drug therapy, but good prognostic information for transplant outcome was not available.

Patients, both then and now, crave reliable information about treatment options including transplants, for cases similar to their own. Once way to accommodate this need is to maximize clinical opinions as a substitute the dearth of research data about transplants and BMFD. Encouraging second opinions for such an important decision is appreciated by patients.  A second way clinical providers can help is to encourage their institutions to review and refresh information on local websites. Many patients are misguided by outdated information on their hospitals or academic medical centers’ websites. Good information provided by clinical practitioners, coupled with support from patient advocacy organizations can help ensure an easier decision process for those patients facing transplants.