Dr Shannon Maude: The Novelty of CAR T Treatments Requires Patient Education

Chimeric antigen receptor (CAR) T-cell treatments are still new enough that there are still unknown regarding long-term side effects, which is something patients need to understand before they undergo treatment, said Shannon L. Maude, MD, PhD, of The Children's Hospital of Philadelphia.

Since CAR T therapies are so new, what are patients being told about what they might need to expect regarding long-term complications?
It’s true that with the current experience with CAR T cells we don’t have experience beyond 5 to 7 years, and so, there’s some things that we maybe don’t know, we don’t know yet. And there are the potential for side effects 15, 20 years down the road that we haven’t discovered yet just as there are with any new therapies.

What we council patients on now is that because this is still a relatively new therapy, it’s something that we continue to need to follow them far out—beyond 5 years, beyond 10 years, beyond 15 years—to see if there are new side effects that we may anticipate to develop. Right now, the main long-term potential side effect that we’re seeing is really related to the actual efficacy of the CAR T cells, and that’s B-cell aplasia.

What relapse after treatment has been seen with CAR T treatments?
This varies between different trials. But, in general, there have been relapses seen in the 30% to 50% range of patients who initially achieve remission. And there are 2 types of relapses that have been seen. One, is that if the CAR T cells do not persist for a long time, there may be residual leukemia that is able to relapse. In the other type of relapse is that the leukemia may change the way it appears so that it is no longer detected by the CAR T cells, and that’s called CD19 loss or CD19 escape. And that has been the more common type of relapse that has been seen.

What sort of patient and physician education does there need to be regarding CAR T treatments?
When we are initially seeing a patient who is considering this therapy and we’re evaluating them as a candidate, we do a lot of education from the physician side, from the nursing side to talk about what it means in the immediate period and also what the follow up will look like and what it will look like long term. So, there’s a lot of one-on-one education, but there’s also some educational materials that have been produced as these therapies have become more widely available.
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