Stronger Together | Tips for Patients and Care Partners During the CAR T-Cell Therapy Process

Transcript

Jamie Forward:

So, this interview is part of PEN’s ELEVATE series, which encourages patients to take an active role in their care to improve their outcomes. So, as a provider, how do you empower patients and care partners to participate in care and treatment decisions?

Dr. Danai Dima:

So, this is a great question. So, I think prioritizing clear communication is very important here. So, as physicians, we should always use clear and plain language to explain the nature of the disease and chemotherapy, including all the potential side effects to ensure that patients grasp at least the essential information. So, because it’s often difficult for patients to absorb and retain everything during the initial consultation, I think repeating the same things over and over is key. Ongoing discussions are very necessary because that’s how patients gradually build up their knowledge, without overwhelming them in one visit.

It’s also very important to tailor the information to health literacy of each patient and cultural background. We should always adapt the depth and format of the information we provide to patients based on their level of understanding and their cultural background. Another thing is I think providing patients with summaries or visual aids, so reinforce all the information we talked about. There is a wide range of educational resources out there including pamphlets with pretty good visual content and online videos. And I always routinely encourage patients to review these materials at their own pace.

Next, I think it’s important to encourage shared decision-making, and of course, creating an environment where patients feel heard and respected.

So, it’s very essential to present all reasonable treatment options to patients and discuss the risk and benefits in a clear and balanced way. We should invite patient questions and create a space for patients and their caregivers to share their values, their goals, and concerns, reinforcing that their preferences are central to our final decision. I think that further makes patients trust you more and also encourages other active participation. Another important thing that I’ve seen, it’s very helpful is encourage patients always to call with new concerns or questions they have.

Because sometimes patients just don’t want to bother us, but I always say, “Look, if you have questions or new concerns, just give us a call. We’re always here for you.”

“Maybe I’m busy, but my nurse or my nurse practitioner can answer those.” And last, I think as physicians, we should always involve patients’ families and caregivers in all discussions to ensure that the patients have support at home. And connecting patients with support groups could be also incredible value. I mean, these patients, really allow patients to share their experiences, learn from others, and I would say overall, feel less alone in their cancer journey.

Jamie Forward:

That’s great advice. So, part of making care decisions is setting treatment goals. So, what is the goal of CAR T-cell therapy for myeloma?

Dr. Danai Dima:

So, this is a great question, and this is a very important question when discussing treatment goals with patients.

So, the primary goal or CAR T-cell therapy in myeloma is to achieve a deep and durable remission and ideally minimal residual disease negativity in patients with relapsed or refractory disease.

So, CAR T is not considered curative, but I think that with CAR T-cell therapy, we basically aim to significantly reduce and eliminate most of myeloma cells that patients go into a complete remission, prolong the progression for survival and overall survival of patients, very importantly improve the quality of life of patients by reducing the disease burden and symptoms, and offer basically a chemotherapy free interval, which is very, very meaningful, especially for patients that have heavily pretreated disease.

And they’ve been on continuous medication for a very, very long time.

So, because myeloma is still considered incurable, it’s very important to be realistic but hopeful at the same time. For some patients, CAR T-cell therapy can provide remission periods of a year or more, and sometimes even much longer. We saw new data show that in one of the major trials, the one-third of patients was disease-free after five years of median follow-up. That was very, very important. And all these expectations, of course, they depend on the type of product patients receive, their characteristics, and their prior therapies. So, it’s a combination.