Do patients’ and doctors’ treatment aspirations align? KCCURE survey – part A
Prof Michael Staehler – Universität München AöR, München, Germany
Dena Battle – President, KCCure
MS: Hello, this is Michael Staehler, I’m a urologist from Munich specialised in urologic oncology. And I have the great pleasure to have as my partner Dena Battle from KCCure and we’re going to talk about patients’ perspectives on efficacy and safety and quality of life in metastatic kidney cancer. When we have those meetings we do know that we are always worried about side effects, about quality of life, and that is one of the main drivers of our conversation with and around patients. Dena, I know you have a different view on that and to support this your organisation, KCCure has performed a couple of impressively big surveys with patients in the thousands so that the data you generate actually can compete with large phase III trials. Why did you do so and what is the main focus on your surveys?
DB: Thank you so much, Dr Staehler, it’s wonderful to hear that doctors are really listening and paying attention to the work that we’re doing. So just a little bit of background – KCCure, we are a patient-driven evidence-based kidney cancer advocacy organisation. So we are engaged with patients every single day and then we use our surveys to generate quantitative evidence so that we can really educate providers and let them know what patients are thinking and give some thought to what matters to patients when decision-making comes up. I do think that there are some misperceptions and our data has made people stop and think twice about what patients are looking at when they’re diagnosed with cancer and they have to make a decision about treatment. So we’ve done six surveys, actually, but our last two big surveys with over a thousand patients we asked questions about preferences and what matters most to patients in terms of treatment outcome. What we see over and over again, no matter how we ask the question, is that patients are looking for treatments that will offer a complete response. So they’re really heavily focussed on efficacy. Things like tolerability, toxicity and/or cost are really not factors when they’re selecting their therapy. I think that surprises some people but it’s really important to know what patients are thinking.
MS: So we, as doctors, usually hear, ‘What is it going to do to me, this therapy?’ So we’re not really left with the question ‘Is this a therapy that works for me?’ Why do you think we hear that question more than the question about efficacy?
DB: It’s normal and naturla for our patients when you’re starting a therapy to say, ‘Okay, how is this going to impact me?’ When patients are asking those questions it’s not because they’re saying, ‘I don’t want the therapy,’ they’re viewing it as this is the therapy I need to stay alive, what’s it going to do to me? How difficult is it going to be for me to manage my life? It’s not really a trade-off for them. So being on treatment is equated with being alive for them. So I can see why there’s discord between doctors and patients because doctors do probably hear every day a lot of questions like, ‘What are the side effects going to be and how difficult is this going to be?’ But patients, really what they’re looking for is advice on how can I manage this, how can I make it tolerable?
MS: We’re going to come back to that. But if you say patients want efficacy, how should we communicate efficacy and what is it they’re looking for?
DB: This is a really tough question. What’s most important today, especially in managing RCC, is just that there are a lot of different treatment options available. What’s most important is that doctors discuss all of the available options with patients so that they can walk through the risks and benefits of each treatment and really come to a decision together about what works best for them. I think clinical trial data is helpful in showing patients. Obviously it’s difficult because you can’t do cross-trial comparisons. But walking through with patients what the results were in those trials and talking to them about risk and benefit and then making a recommendation to help them make a decision is the most ideal way to do it.
MS: So if I tell a patient there is drug X and it has a PFS and an OS and it has a response rate like this, is that what they want to hear? Is that how they understand it? How are we going to inform them? What do they want to know?
DB: Showing patients hazard ratios might be a little bit difficult, even doctors have trouble understanding hazard ratios sometimes. So going too deep in the weeds on clinical trials probably might be confusing and difficult for patients. Walking through… and even using terms like PFS and OS, our data show that patients really don’t distinguish between OS and PFS or DFS, depending on the trial. But having a conversation with them and saying, ‘These are the choices,’ you can show how drugs perform in a randomised trial and give them a reasonably good idea of efficacy rates.
MS: So what is seen as efficacy by a patient? Is it that they have a cure which means somehow all the tumour is gone and you’re off therapy? Is it that the tumour is shrinking or that it’s stable? What is it that patients need to know about efficacy?
DB: Our research shows over and over again that complete response is the most important marker for patients. It’s the number one outcome that they select over and over again. So I think talking to patients about complete response rates in trials is important. Patients first are seeking a curative, potentially curative, result. They want to know could I potentially have eradication of my disease with this treatment. Then short of that, the second most important factor for them is durability, which really you’re looking at PFS but being able to show them this treatment, even if it might have potential to be curative for you, if it’s not then this is what we think the durability would be for that.
MS: What do patients understand as being a durable therapy? Is it six months? Is it twelve months? Or what do they think is a therapy that works well for them for a long time?
DB: So we asked this question and I think doctors were surprised by the results. When we asked patients what their definition of long-term was, I think it was 80%, maybe 70%, the vast majority, said it’s five years or longer. A quarter of the patients actually said ten years. So the perception that a doctor might have for durability might be very different than what a patient is thinking about in terms of durability. So that’s really important for doctors to know that because a doctor might say… Two years for them might seem very meaningful but to a patient that might seem short to them. So discussing that and maybe talking about the concept of sequencing therapies and how we use therapies over time to increase durability is a good way to bridge that gap.
MS: So if we have those discussions with patients and showing them different trials and all of this, we tend to call that shared decision making. How should that shared decision making be optimised? How would you want us to include the patient into this decision or do you think that patients just need a recommendation and they follow through with that? Which kind of information do they need and how do we get it to them?
DB: This is really complicated because a crucial aspect of this is time and that’s something that is not always available in our healthcare setting. But I really do think it’s important, especially at treatment decision-making appointments, to really take as much time as possible and to really go through all those options. One thing I encourage providers to do is to tell patients that they have time to make a decision about their therapy change, that it’s not something that has to happen immediately. To give them a little bit of time to process the information, really think about what matters to them. Maybe take a few days or a week or so to think through and encourage patients to be thoughtful about that decision. It’s a very stressful situation and a lot of patients might feel like, ‘I have to make a decision immediately, I have no time.’ Letting them know that there are options, they have time to think about it, is really most important in that setting.
MS: Should we send patients to Google or hand them a brochure or have them just go to any pharmaceutical website? Which are good sources of information for patients that they can rely and trust?
DB: Google is dangerous; the internet is a lot of information. But actually I don’t encourage doctors to tell patients to ‘Stay off the internet’ or ‘Avoid Google’ because of course that’s what they’re going to do. That’s where we go for information. I do think letting them know that there is a whole lot of information out there and some of it might be distressing, it might be outdated, it might not fit the context of their situation. So encouraging them to use caution. 80% of patients go to social media and that’s why we run online communities, we run them on Facebook. We use a very evidence-based approach so for patients who are on social media we hope that they’ll join a KCCure community. Getting that type of shared information is really valuable for many patients. We moderate communities and make sure that we’re promoting evidence-based information that is being shared. So that’s good. There are certainly lots of other great sites out there that offer good quality information but it is hard to discern for patients.
MS: If you would want to summarise patients’ perspectives on efficacy, safety and quality of life in maybe two sentences, how would that be?
DB: That’s a hard question. Okay, in two sentences. I’ve already used up my two sentences but I would say patients with cancer, they want to be cured and they’re seeking therapies that offer them an opportunity for cure. When they’re on treatment, toxicities are not a trade-off, they are simply what people have to live with with cancer. So talk to patients about the opportunities of therapy that are out there and help them better manage their side effects so that they can live better while they’re on treatment.
MS: Thank you so much for this insight into patients’ data. The work that you’re doing, we really appreciate all the flags that you’re raising and making us aware of not the one patient story but evidence-based data are what we have to consider in treating those patients in a better way. Thank you so much.
DB: Thank you so much.
