EHA 2025 | Lymphoma Coalition 2024 Global Patient Survey: quality of life and treatment satisfaction

At this EHA, we contributed to the EHA lymphoma scientific working group session that was presenting how we judge outcomes. It was interesting because the session combined how we judge outcomes from the clinical perspective based on PET-CT scans, based on molecular analysis of the treatment response, and my role was to present how patients value the outcomes and how they value response. Through data from the Global Patient Survey on Lymphomas and CLL in 2024, we got more than 11,000 responses from 79 countries representing 20 lymphoma subtypes. And the data demonstrates that patients value equally and very highly achieving a response or remission, longer survival, but also quality of life. 95% assigned to achieving a remission or a response to longer survival in 94, so only one digit difference to quality of life. But also 90 percent value lower or more manageable side effects, which is giving us a clear message. Patients are not only expecting treatments that increase survival, that increase the probability to achieve a response or a remission, but it’s also about living better. It’s not about living longer only. It’s about living longer and better. So we more in-depth presented data on how patients experience these symptoms, and it’s important to notice that it is not equally reported in the different lymphoma subtypes. So, for instance, in diffuse large B-cell lymphoma, they report more highly the intensity and also how it impacts the functioning in their daily life. It’s not the same when you see, for instance, at CLL. The symptoms are completely different, how they are reported, and the severity, the intensity, how they impact their functioning is also different. Not only in this aspect, but if we see through patient-doctor communication, there are huge gaps here with patients reporting that they are not allowed to bring questions. And this happens more in aggressive lymphomas than in indolent lymphomas, probably because of the characteristics of the disease. Shared decision-making is less likely to happen. Those discussions are where patients are invited to present their questions, where doctors don’t interrupt them as they talk, or where they have more time for dialogue before making decisions on their treatment plans. We also presented a poster when we were looking at the correlation between the level of confidence that patients have in the treatment pathway connected with the symptoms they were experiencing and if they were receiving support or not support. It’s interesting that for unsupported symptoms, patients report less level of confidence in their treatment pathway. That could have an impact on adherence, that could have an impact on how they perceive their overall health, and of course, it impacts dramatically the overall patient experience at the end of the day. We look also at differences in gender, gender variability. We notice that women are more likely to report dissatisfaction in the conversations with their doctors, for instance, for their lifestyle or their preferences not being discussed, not being addressed at all, or feeling less informed, less supported. That’s an interesting finding looking ahead that we need to tailor and to personalize more. Of course, this may vary also from patient to patient. We know that it’s closely related to the expectations that you have concerning the level of information, how the dialogue happens across the entire treatment pathway, but as the needs, the priorities of the patients change as the disease evolves, we need to check regularly how much information they may need, how much support they may need. They need to feel listened to, especially when they report symptoms or adverse effects. Otherwise, the overall perception of the treatment benefit decreases significantly. And here I want to introduce also how relevant continued fatigue is reported for over three out of four patients report fatigue as one of the most disrupting symptoms. Some report it as a symptom, some reports as an adverse effect. But we know that fatigue gets worse as you evolve in lines of treatment. And another analysis we presented is how the treatment, the perception of benefit evolves from one line of treatment versus later lines. So, for instance, at the beginning of the treatment in first line, of course, survival is the dominant attribute that everybody would like to achieve that continues being present, but as you evolve and as you relapse and get more lines of treatment, the priorities change completely, and now become more conscious how relevant it is to have a certain level of balance, so it’s about finding a management of the disease to the point that is not disrupting anymore their daily life but to be able to have that life. And when you analyze it more in-depth, we talk also about differences in basic things as walking, taking your capacity to deal with activities of daily life, pain, and discomfort. It’s also present. Anxiety and depression, all the mental health area, the level of distress also increases as lines of therapies evolve, and fear of relapse continues being a dramatic aspect for the overall patient experience, especially in aggressive lymphomas, in relapsed/refractory diffuse large B-cell lymphoma, for instance, when you analyze in comparison to the rest of the data sets, it has a significant difference. Probably again because of the characteristics of the disease and how it evolves and the tendency once the patient’s relapse, once the tendency to be more likely to experience those relapses again. So, as take-away messages, what I would like to stress is, first, they need to check with every patient what their treatment goals are and what is the environment where they function, what is their role, what are their priorities, what things are being important for them to continue having in their life. And to have good discussions and ongoing dialogue, this is not a one-point static dialogue, this should be an ongoing dialogue, checking if the treatment benefits, potential benefits, are likely to match the treatment goals that patients expect. And all this is to adapt depending on the gender, depending on the age, but also depending on the lymphoma subtype, know that the expectations or the needs may change and may not be the same. And and this is not about investing more time we know that that’s a constraint it’s about bringing the right questions and having a strategy when you communicate so if I only have ten minutes, okay, what I need to pick today that is like the most relevant conversation I need to have with my patient. Invite them to make their own questions. Don’t interrupt them as they talk, as they report, and especially when they report symptoms, it’s about providing support. It’s not acceptable anymore that having even guidelines on how to manage fatigue, there are interventions that are quite successful, at least to reduce the perception and to take that sense of agency that you were listening, you were recommended to do certain things and you do those things. That sense of control, that sense of agency is also important for the mental distress level. And it’s not acceptable that we don’t provide that level of support because those are easy interventions that are not costly. and that at the end impact the overall patient experience and probably you are not bringing the best clinical benefit but you are bringing the best life possible and that’s our goal.

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