Unaddressed Adverse Effects Undermine Patient Confidence in Lymphoma, CLL Care Plans: Lorna Warwick

In part 1 of this interview at the European Hematology Association 2025 Congress, Lorna Warwick, CEO of the Lymphoma Coalition, discusses the adverse effect profiles experienced by patients with lymphoma and chronic lymphocytic leukemia (CLL), as well as how these adverse effects can negatively impact their well-being if left unaddressed.

She also highlights the objectives and key findings of an abstract she co-authored, titled, “The Effect of Unaddressed Side Effects on Patient-Reported Confidence in Care Plans Among Patients With Lymphoma or Chronic Lymphocytic Leukemia (CLL).” The study, presented during Friday's "Quality of Life and Palliative Care" poster session, involves findings from the Lymphoma Coalition's 2024 Global Patient Survey.

This transcript was lightly edited; captions were auto-generated.

Transcript

Can you summarize the most common adverse effects that patients with lymphoma and CLL experience and how unaddressed adverse effects may impact their well-being?

When we're looking at the side effect profile of our patients, by far, the no. 1 side effect that patients report is fatigue. Fatigue is often minimized by health care professionals, maybe unintentionally, and perhaps just because there isn't a magic pill to treat fatigue. Still, patients say that this is not only the leading side effect that they have, but it's also a leading symptom of the disease. So, it's something that can be magnified and compounded through the patient experience, instead of just a one-time thing. It often persists long after treatment has ended.

This becomes problematic, not just during treatment, but right from the beginning when they're diagnosed. It's often a symptom they have, it gets worse during treatment, and then can persist for many years afterwards. When we ask patients about their fatigue and the impact on their quality of life, depending on the subtype, of course, and depending on if they're relapsed or refractory to the disease, this can be quite significant, where we see half of the patients say that it's a severe or very severe impact.

On top of fatigue, of course, there's side effects that are treatment-dependent. We'll see the usual nausea with some traditional chemotherapies, constipation, diarrhea, those kinds of GI [gastrointestinal] upsets, which, of course, are upsetting for patients. Why I point some of those out, especially with things like bowel issues, oftentimes, if they're a lower grade toxicity, they may not get the same attention in [the] clinic. Yet, the persistence of these can be quite upsetting and greatly impact a patient's quality of life.

We're not just looking at how severe the impact is. It really is that impact on their quality of life and persistence, of course, ties into that and maybe is not well addressed in [the] clinic.

Because of this, what was the objective of your study? Can you summarize the key findings?

We do a global patient survey every 2 years. Our global patient survey really captures patient experience overall. We're looking at the side effects they may have had, like the practical aspects of care, what kinds of treatments, how they were administered, as well as quality of life. So, barriers they may have experienced, what the relationship is like with their doctor, the quality of those communications, health literacy, their information level, all kinds of aspects of care that maybe are not well explored, but do contribute to a really good overall patient experience, if they're all positive.

What we do with the global patient survey is then look at all kinds of different analyses to really understand what is happening in the clinic. Now, to give an overview, we had over 11,000 responses to the 2024 Global Patient Survey, so it's a large data set. For this particular study, we were looking at patients [who] had been treated and had indicated that they had side effects due to their illness. This was over 6600 patients, which is still a very good data set to look at.

What we know is, when we look at [the] patient confidence level, if patients are really confident, then they are hospitalized less. They have better interactions with their doctors overall, and they also are better able to self-manage their care. Confidence is an important topic for us, and in this particular case, we were looking at the side effects that patients were experiencing and seeing if they were addressed by their clinician. If they had any satisfactory resolution at all, and if they weren't, then what impact did that have on the patient's confidence in their doctor and also in the care plan that had been established for them?

What we see is that if patients are not having their side effects addressed, then their confidence decreases. Of course, then, that has an impact on their overall experience with their lymphoma, but also increased hospitalizations and those other things that I mentioned before, which have a negative impact, not only on the patient, but on health care systems. Raising that confidence level of patients is really important, and one of the ways to do that is to actually address the issues that a patient is raising.

If I could say, with this, we know that sometimes some of the side effects that patients are talking about are not easily addressed with medication and are not something that a doctor always feels well-equipped to address. What is important is having that communication, or that dialogue, with the patients and talking about what is happening, what they can and cannot do to help them, and the steps that they are taking to help them resolve it, even if it doesn't completely solve the issue.

If there is that ongoing dialogue, and the patients are actually being listened to, if they have questions, you're taking their questions, [and] doctors are checking that they're understanding the questions well and giving the patients feedback, that can still increase the confidence level even if the side effect is not completely resolved.