EBMT 2025 | The role of palliative care in patients with sickle cell disease undergoing SCT or gene therapy

So until now, palliative care or advanced care as it is called in some institutions was basically reserved for patients who have an oncologic diagnosis who are undergoing transplantation. The idea being that those patients have a greater symptom burden which requires different methods to deal with that symptom burden. But as we have started doing more and more transplants and gene therapy for sickle cell disease, it has become clearly apparent to us that sickle cell disease, because of all the chronic issues that patients might have, also has an equivalent, if not a higher burden of disease than many other oncologic diagnoses. So these patients, they could also benefit from having advanced care provided to them in the form of palliative care consults. 

Now, I should clarify over here, palliative care is very different from hospice care, where we are providing end-of-life care. When we talk about palliative care, we are talking about symptom control, symptom management, palliation of any adverse symptoms that the patients might be having, be that pain, nausea, or just psychological and spiritual care. 

So we and many others have developed these dedicated programs for patients undergoing transplantation and gene therapy for sickle cell disease, which are focused on providing that level of care, which is very common in the oncological world. Now we are bringing that to the classical hematology, sickle cell disease world, and providing these patients with the same level of care. So that’s what we’ve described in our recent manuscript and I hope people will find that helpful and educational.

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