CAR-T therapy and impact to cancer patient outcomes and experience of treatment

Mr Matthias Hellberg-Naegele - Cantonal Hospital St Gallen, St Gallen, Switzerland

I talked about outcomes and experience of patients with CAR T-cell therapy from the perspective of an advanced practice nurse working with patients with cellular therapies. I talked about some findings from real-world data so we see that there are chronically ill patients, a lot of third-line or fourth-line therapy. Real-world data showed that up to 400 months from the diagnosis, over 500 days after apheresis, CAR T-cell therapy starts or a re-transfusion will be given. If you look to the illness trajectory of lymphoma or myeloma patients you see that this CAR T-cell therapy is only a period, a small period, of the whole trajectory of a chronically ill patient.

We also see that there is a high proportion of elderly and even frail patients in the CAR T-cell patients. So real-world data showed that in Europe patients are up to 83 years, in the US data up to over 90 years, and that 9-19% of patients have an ECOG performance status of 2 or higher. Also because of the third-line, fourth-line therapy also a lot of patients are in palliative conditions. Those patients receive side effects after the re-transfusion of the CAR T-cell therapy like CRS, cytokine release syndrome, or the neurotoxicity, the ICANS syndrome. CRS depends on the product – up to 13-14% grade 3 or higher and ICANS up to 24% grade 3 and higher. Maybe you ask yourself if it’s worth it to get all those side effects with this therapy.

I have a really interesting case I will present, not a typical CAR T-cell patient. It was a very challenging patient but we learned a lot from this patient and from this case study. So it was a patient who came to the lymphodepleting chemotherapy that the CAR T-cell re-transfusion starts with. He came to the chemotherapy centre and came there and said, ‘No, I don’t want this anymore, I want to die.’ We have this option in Switzerland with assisted suicide, so this is an option patients can take. So we started a discussion with the patient, two more discussions with the physicians together with the wife, and at the end of this discussion the patient said, ‘Okay, I will do this.’ He got the worst ICANS neurotoxicity side effects you can get and it was a really hard way for the patient but even for the staff, the nurses and the doctors, for the staff on the ward. It was really challenging for us and we thought how can we handle this? We found three questions we think a patient could ask in this situation.

In this palliative situation a patient can ask himself, so in German it’s three words and you can pronounce a different word. In English there are some more words – ‘Do I want this?’ You can ask yourself, ‘Do I want this?’ – is it my wish to receive a CAR T-cell therapy or will I do this for someone else which probably is okay, I think. ‘Do I want this?’ – is this really what I want or do I want something different? And ‘Do I want this?’ – is it really a CAR T-cell therapy I want or maybe are there other options that maybe better fit to my conditions? This helped us to think about asking these questions to the next patient to help us to cope with this situation.

Then there was an interesting change. Three months later after he resolved and was discharged from the ward we all thought he would go to assisted suicide. I met him three months later in our outpatient clinic and he said, ‘Oh, I’m feeling so well and this was the right decision.’ It’s what some studies also say who examined the patient experience of CAR T-cell therapy, that even before the therapy and after the therapy the advantages from the patient perspective of the therapy are more than the disadvantages. So this was really an interesting case.

So I resumed in my presentation that we have chronically ill patients, elderly patients, sometimes frail patients in palliative conditions that, at the end, mostly the advantages are more than the disadvantages from the patient view. But, to look at my role, that it is important for such patients that they have a contact to an advanced practice nurse.

What is your message to other healthcare professionals?

To other healthcare professionals I always have the message let us work together. Clinical practice, I always think it could be more, that we work together and not against or every profession for its own. Even if in such a challenging patient group like cellular therapies or the CAR T-cell therapies, they need us to work together so that we can give the best outcome of our work to the patients.