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EBMT-EHA CAR-T 2019 | Educating patients undergoing CAR T-cell therapy

Natacha Bolanos, from Lymphoma Coalition, Madrid, Spain, explains the importance of patient education and the balancing of benefits versus risks, at the 1st European CAR T-Cell Meeting, held in Paris, France, co-organized by the European Society for Blood & Marrow Transplantation (EBMT) and the European Hematology Association (EHA).

Transcript (edited for clarity)

Education is essential for patients to understand what they will face, and also for patient organizations to deliver their work. I would like to see work in two directions. One is the work that needs to be done with patient organizations and patient representatives, to involve them from scratch, from early stage of research. And also, to develop capacity building and to develop resources, educational resources, to be capable to inform patients timely, and also correctly in a complete way, bringing all the information that a patient needs to know because it can bring a lot of fear, a lot of doubts and uncertainties when you are facing one of these decisions and you are facing that difficult moment.

And also, to put in balance the benefits versus the risk, all the chances, all the opportunities we have to manage. And also, all the qualifications that are required behind the therapy to guarantee a level of management that is acceptable, that is even decidable from the patient perspective, involving nurses, involving qualified staff. And we need to communicate in a complete way that information to patients. From the industry perspective and the health care providers perspective, what we would like to see is a perfect integration of all the stakeholders to build these education resources. But patient organizations should be key players to deliver the information timely to patients.

Incorporating, in addition, instruments to support the burden of the disease, the burden of the treatment itself, and how to manage the different stages of the treatment and the care path. As you may know, there are certain moments in the CAR T-cell therapy path that are critical for the success of the therapy, and patients will need more input and more support in that area. And we should be thinking not only about the information that patients expect to have, but also the information that we should be collecting from patients. I mean, patient reported outcomes, for example, to come as a supplement to the clinical outcomes to describe better the symptoms, to describe, and even to feed management strategies in the near future, and how to address these symptoms, what works, what doesn’t work.

For example, the toxicity grading scale is not harmonized yet, there is a lack of consensus, so it doesn’t mean the same depending on the trial. It’s important also to harmonize that, as it is important as well to harmonize the patient reported outcome instruments, and those are areas where we should be working together to improve the final outcome at the end.
And I think that it’s part also of what we should be bringing to the value proposition for regulators and for patients in the future because this therapy is very challenging also from the access perspective. Prices are high, a lot of investments in research, but as patient representatives, we expect to have equal access for all the patients, no matter where you are, no matter where you live. And I would like to see the therapy in every country of Europe, and in every country in general.