Safety and QoL assessment, how do they impact patient decision? KCCURE survey – part B
Prof Manuela Schmidinger – Medical University of Vienna, Vienna, Austria
Dena Battle – President, KCCure
MS: Welcome to the series of webinar hot topics in advanced renal cell cancer. My name is Manuela Schmidinger, I’m Professor of Medicine and Medical Oncology specialised in kidney cancer and I work at the University of Vienna. Today I have the great pleasure to be in a discussion with Dena Battle. Dena is going to introduce herself and we are going to speak to discuss the issue of the patient preferences on quality of life and safety outcomes. We are going to discuss an important patient survey that was published by Dena. Dena, to you.
DB: Thank you so much, Dr Schmidinger, I’m thrilled to be here. I’m Dena Battle, I’m the President of KCCure. We’re a patient-driven, evidence-based patient advocacy organisation and we do a lot of patient surveys. Today I’m going to be talking a little bit about our very latest survey that we conducted with over a thousand patients. So I’m excited to do this.
MS: I was very excited when I saw the data that you presented. You have been working on these patient surveys for quite a long time and I have seen what you have published and presented in the past. This time it was very interesting about the patients’ priorities and expectations regarding not only, of course, the outcome from the treatment but also everything that involves toxicity, reporting and quality of life. I’d like to discuss with you this issue, so what are your major findings and what were the things that raised most attention to you?
DB: So this survey we really wanted to focus on patient preferences and experiences, especially in the combination era because it’s such a big change in the last five years. We asked again, this is the second time we’ve asked this in surveys, what is the most important outcome that you want to see from your treatment. Once again, overwhelmingly patients said that they want to see a complete response – they really want eradication of their disease. That’s overwhelmingly number one. That’s followed by durability, so they wanted to work for a long time, and then things like toxicity or even reduction of symptoms and cost, those are ranked at the lowest. This really mirrors what we saw in our 2019 survey as well.
MS: So you just mentioned that the most important topic for the patient, in fact, is to achieve a long-term response or complete response. I was wondering whether the timepoint when you give out this survey to the patient matters? Because I could imagine that, particularly at the first appointment when the patient sees his or her medical oncologist, it’s very important for the patient to raise this important issue about long-term survival. Eventually when the disease goes on and when the patient has got this confidence that this is maybe not a deadly disease but maybe something chronic that might go on over years, I was wondering if you gave out this survey for a patient, let’s say, who has been on treatment for a while, whether then other aspects come into the game that might be even more important than complete response? Aspects such as toxicity, quality of life etc.? What is your view on that?
DB: So we actually looked at the data across. So we have a lot of patients participating and we actually looked at it for patients who are in first-line therapy and subsequent lines of therapy. While you definitely see a few differences, complete response is still number one. My thinking behind this, I can’t know entirely, I think every patient experience is individualised and what they’re looking for at any given moment might be shifting. I do think that patients, even those patients who realised this treatment for me might not be curative, they are thinking, ‘But I want to stay alive long enough until there is a treatment that’s curative.’ So in the end they still are ultimately looking for a curative therapy, even though they are, of course, willing to accept longer survival in the interim.
MS: I think the patients’ adherence to the treatment is something that is really unique in oncology. I have made the experience that some patients are very concerned to discuss potential dose reduction. One would expect that a patient who has, let’s say, challenging treatment in oncology would raise all the time the topic about please let’s have a dose reduction etc. So I have not made this experience with my patients. Actually, my patients are very concerned if the issue of dose reduction is raised because they learn from the beginning that there is an association between the treatment and the dosing and the outcome.
DB: Yes, this is something that we definitely see. There are patients that are anxious about their disease and they view treatment as their weapon against the disease. So the concept of dose reduction is very concerning to them. In the latest survey we were asking patients who were on IO/TKI, now surprisingly 63% of patients reported that their oral therapy had been reduced which is what we would expect. But almost a quarter of patients said that the dose reduction only helped them a little bit or didn’t help them at all. I thought that was interesting, that so many people felt like it didn’t help them that much. But there were a lot of people that were very anxious about that. So almost 60% of patients said that they were really concerned about the dose reduction. When we talked to them, when we asked them questions about how they feel, only 16% of patients proactively asked their doctor for a dose reduction. So that means they come in, they talk about their side effects and then their doctor is saying, ‘Let’s dose reduce.’ So that shows that they’re not proactively seeking that and then they’re anxious.
MS: Yes, absolutely. I think what is very important when we assess the side effects in patients is to ask them not only the grades but also the frequency because the frequency in terms of how many days of the month, let’s say, do you experience this kind of side effect in this severity? Because, in fact, if the patient has had diarrhoea grade 3 on one day we would report this as grade 3 diarrhoea. But it’s possible that it may be only once a week and this is something that the patient can really deal with. And also not every side effect has the same relevance for every patient. Some young patients, from my point of view, for them the diarrhoea is not a major issue because they can manage it in some way. For older patients who have difficulties to get up from the bed or from the chair, this might be a challenge to run to the toilet, right? So I think it really matters who you are talking with.
DB: Yes. One thing we do is we presented patients with a list of different side effects and we asked them when they would report it to the doctor. Most patients indicated they would wait – for almost all the side effects, most indicated they would wait until their next scheduled appointment. That can be twelve weeks before you would see your doctor again, so this when you talk to your doctor and why, even in a severe side effect like shortness of breath, only a little over 50% of patients said that they would report it either immediately or within the first few days. So you have a lot of patients who have side effects that are concerning and they’re anxious. It’s a probably a multitude of things – part of it is they’re concerned about dose reduction. I also think to your point there is this question of what is severe, what is not, what is worth talking to my doctor about, what is not. So that’s a big problem, it’s when to communicate and how and what will the result be.
MS: I think it’s also important for doctors to always have in mind that not every symptom is related to the treatment. I realised recently that many things that I write down on my report are actually lifestyle related issues and the patient hasn’t been in a much better condition before the diagnosis of cancer with respect to mobility, for example, or other issues. Many things are lifestyle related and sometimes you have this impression now once because the patient is on an oncologic treatment you need to deal with all of these things but they were there before as well, right?
DB: Yes, and we don’t have great tools for measuring what’s disease related, what’s not. So we need more and better tools to help facilitate those conversations between patients and providers. But one thing that is helpful with patients is we know from the survey, we know that efficacy is so important to them. They want their treatment to work and they want it to work for a long time. For a provider, dose reduction is just a normal part, a routine part of management of a drug. If patients are aware that we need to find the right optimised dose for you and that dose reducing because of side effects doesn’t necessarily mean that it’s going to impact efficacy, if they know that from the start then maybe they are more open to seeing it as a tool versus losing out.
MS: Dena, have you seen this interesting abstract and presentation on health-related quality of life measures where the patients were asked about the relevance of the questions addressed in the FKSI-19 and EORTC QLQ-C30 scores? Have you seen this? It’s quite interesting, isn’t it?
DB: It is and it was wonderful to see that presentation by Dr Bergerot at the last conference. I think it’s fantastic that we’re having this conversation, it’s long overdue because the measurements that we have I don’t think are really addressing things that are meaningful to patients in the era of therapies that we have today. But it’s interesting to me, those tools are really for use in clinical trials and I almost feel like we need something different in the clinical setting. I’m curious for you as a clinician, would it be helpful for you to have different tools to talk to your patients about their quality of life in clinic?
MS: Frankly, I can let you know one thing. For me, the surveys that you have been producing now for a while are much more important than these quality of life surveys that are in the clinical trials because you were asking always those questions that I know are relevant to the patient because this is exactly what they raise with us at the visits. So I like that very much and I sometimes was a bit surprised by the amount of questions I saw that might not be so relevant for patients from these questionnaires in the clinical studies. In contrast, the questions in the survey, this is much shorter but it’s much more relevant. Every question that you raised is relevant. So for me that would be much more important and much more interesting to discuss with the patient also and to ask the patient.
DB: Well I’m very happy to hear that the work that we’re doing is impacting the work that you’re doing and creating a bridge between providers and patients because that is our goal. We are looking at tools that we could potentially develop that might be more useful for you, based on the survey work that we’re doing. So that’s very encouraging to hear, thank you so much.
MS: It was a great pleasure discussing with you today, Dena, on a very important topic. I really would like to congratulate you on this really fantastic work that you are doing for the patients in the community. I think it’s really important and we can be glad that there is such a strong woman at the head of this.
DB: Thank you so much.
