Give Patients a Voice in Myeloma Treatment Planning


Patients – and their caregivers too – should be key players in their multiple myeloma treatment planning.

When treatment planning or conducting clinical trials for patients with multiple myeloma, it is crucial to include the patient and caregivers’ preferences, especially as more drug options become available in this space, said Noopur Raje, MD, director of the Center for Multiple Myeloma at Massachusetts General Hospital.

“With the future with all of the different options we have, this is going to be very critical — engaging patients in decision making,” Raje said in an interview with Oncology Nursing News. “It's mostly shared decision making that is going to be key to how we move forward in the field. The data in this space is extremely limited. We need to do better.”

Raje recently sat down with Oncology Nursing News to discuss her research on the topic.

Oncology Nursing News: Why is it important to include the voice of the patients in these studies?

Raje: We do a lot of things based on the efficacy. I think we need to focus a lot on the toxicities as well, and on the fact that it impacts not just the patient, it's the caregivers, too. Cancer does not affect one person. It's the entire family and friends and support system. What it does to all of them is very important.

The more we engage not just the patient, but the caregivers as well, I think outcomes are going to be better in patients. We are going to do much better, and it's going to allow patients to get more empowered. Anything we can do to do that is obviously moving in the right direction.

How did your team's qualitative study help to address this issue?

I have never been involved in a study like this until now. To me, this was a very exciting and interesting approach. This is just the first foray into trying to understand patient-related outcomes. The team I worked with at Janssen was fantastic. We went into this first with looking at patients. With multiple myeloma, the spectrum of patients is from diagnosis to multiple relapses. During the course of a patient's lifetime, expectations change. Toxicities change. What patients can tolerate changes.

We were looking at all of this for the first time. This was with phone interviews. We looked at patients at different stages. We looked at newly diagnosed patients, we looked at patients who had 1 to 2 lines of treatment, and we looked at it beyond that. To me, this was very interesting because your choices change depending on where you are in your disease state and what is it that has impacted you along your journey with the disease. I thought this was the first step into it.

Again, there is so much more we can do. But as a first step, this was moving in the right direction.

What were the key findings of this study?

We looked at patients through different stages. We looked at patients at the time of diagnosis, and what we found was that at the time of diagnosis patients were fairly dependent on their healthcare providers. They were "go, go, go" and wanted to get the treatment done. There were not a lot of options, and I think that is pretty straightforward when you think about multiple myeloma. When it comes to newly diagnosed patients, we know we give them a triplet and we don't necessarily talk about toxicity as much because you want that efficacy. You want them to feel better. That's something that actually did pan out in this study.

When it comes to second-, third-, fourth-line treatment, there was a little bit of a difference. The difference here was that there was a lot more discussion on toxicity and there were a lot more choices. That's pretty much what we see in the field as well. You put not just patients but 5 myeloma experts in a room, you're not going to get the same uniform answer of this is how I would treat my patients. I think we saw that in these patient-related outcomes study. We saw that they did focus a little more on toxicity and they were given more choices as opposed to the frontline setting.

We do see differences and I think these differences are largely because of the fact that we do have choices. If we just had the one drug, we would not have this discussion. But the good news is that in myeloma we have multiple different treatment options that we can offer, and patients are engaging in that kind of a conversation.

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