ASH 2024 | A collaborative approach to managing first relapse in DLBCL: insights from the Global Patient Survey

Yesterday I participated in a session looking at the treatment options and the landscape for treating patients living with diffuse large B-cell lymphoma after first relapse beyond CAR-T. Because CAR-T is a great treatment but it’s not necessarily available everywhere, neither the best treatment option for all patients. But my role in that session was to provide the patient perspective based on evidence. One of the key focuses of the Lymphoma Coalition is to gather evidence on the patient experience. We run every two years a global patient survey and what I presented yesterday were insights of the global patient survey 2024, where we got over 11,000 responses. We selected the data set of patients living with diffuse large B-cell lymphoma that was over now 1,000 and extracted the patients after first relapse with one relapse only. That were 178 patients representing 28 countries globally. 

The purpose of bringing this data is to present what are the attributes that patients value the most when selecting a treatment. Ideally, the selection of a treatment shouldn’t be based only, not only on the criteria of the doctors, but ideally should be a collaboration among patients, sometimes their care partners if patients want them to be involved, and their doctors, their medical team. So it’s important for doctors to know that patients, after first relapse, they continue having that expectation of receiving curative treatments, but in absence of curative treatments, they of course prioritize achieving remission and also extending survival. 

But what I want to stand up to remark from here is that patients value very, very close, the quality of life. So getting more tolerable adverse events, control of the symptoms, manageable adverse events, gets fundamental. And it’s really, really at the same level almost than achieving remission and extending survival. 

So we invite doctors to have those conversations with patients to understand their preferences, what are their treatment goals, their priorities, their personal circumstances. So the survey goes beyond the attributes, preferences, to ask what are the gaps in communication. 

Surprisingly, one in two patients cannot express them freely without interruptions. Doctors keep interrupting the patients when they are having conversations, don’t invite them to ask questions, and when they ask questions, don’t confirm, don’t ensure that the understanding of the patient is really capturing what the doctor wanted to transmit. Those are also important pieces to know so doctors can improve and put the focus on ensuring that understanding, but also not interrupting the patients when they are explaining their concerns or why they are hesitant to get a treatment versus the other. And here I want to introduce also the importance of bringing clinical trials into that conversation. Only 33% of the patients receive information about clinical trials. More than 70% have never ever been invited, close to 80%, have never been invited to participate in a clinical trial. It is true that for some patients, the information they receive from the clinical trial may not be applicable to their case, or they have urgency on starting the treatment and we know that enrolling a trial can be sometimes time-consuming and you need to pass certain procedures, so it delays the start of the treatment, but at least we should be having those conversations and to let also patients know what clinical trials could be available for them, especially because clinical trials in many countries are the only route, the only pathway to novel treatments. 

And beyond that, we explore the physical impacts of the treatments and also the disease in the patients. One in four patients experience issues with walking, with balance, with pain, with discomfort. And it’s not the only bill, because also the psychological bill is high. Patients experience fear of relapse, patients have concerns about being immunosuppressed. So this needs to be also included in the conversations. 

When it comes to how patients, how well they feel about the information they receive, many of them don’t feel informed at all or only somewhat informed. That’s an issue because they deserve to receive complete information and timely information. Also to check with the patients how much information they want to receive. There are patients that want to receive all information. 

What I want to stress is that most of the patients value having honest conversations from the doctors. They want doctors to be honest, to tell the truth, no matter how sad the news can be. That’s important. What is also important is to provide that information with an empathetic approach. That empathy, that piece of empathy is not always present. And I know it’s hard, I know it’s difficult, and depending on the countries, there are issues with time availability, sometimes doctors, because of the system is quite perverse, doctors are like filling forms at this time that they are talking to the patients, so they are not really like focused, for instance, on eye contact with the patients. And that’s why they interrupt, and that’s why they don’t make questions, and that’s why they don’t confirm that they capture the information. But that’s important because that way they can really personalize how patients want to make that decision. And in this survey, we observed that more patients are wanting to make the treatment decisions themselves. I know. But in general, generally talking, the collaborative approach is well appreciated. And whenever there are care partners involved, care partners may be also welcome to be part of those decisions, so what it’s important is to check with the patient. Do you want your care partner to be involved? Do you feel you are receiving enough information? Do you want to receive more, less? And none of these things are a static thing. You can change your mind as you navigate the treatment journey or the disease journey. So all those things come into play because it’s the only way also to understand what the barriers to treatment may mean for the different patients. And the only way doctors can refer earlier also to a support system where I want to stress that patient organizations must be included. 

So I want to invite doctors to also rely on the patient organizations and patient advocacy groups. You all have patient advocacy groups in the countries where you work so let’s try to approach patient support in a proactive and collaborative way, because we are well equipped with patient information, with patient experience data, there are organizations that have patient support groups or have psychological support. Ideally all these things should be provided by the healthcare systems but we know that we lack that provision of services, so let’s try to bring this collaborative approach.

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