APCCC 2024 Highlights Patient Voice in Cancer Treatment "Presentation" - Silke Gillessen, Aurelius Omlin & David Matheson
November 15, 2024
At the 2024 Advanced Prostate Cancer Consensus Conference (APCCC), Silke Gillessen and Aurelius Omlin introduce the expert panel and voting process, while patient advocate David Matheson discusses patients' illness and wellness experiences. He emphasizes hope's role in treatment and calls for more patient-centered quality of life measures.
Biographies:
Silke Gillessen, MD, President, APCCC, Medical and Scientific Director, Oncology Institute of Southern Switzerland (IOSI), Bellinzona, Switzerland
Aurelius Omlin, MD, Secretary General / Treasurer, APCCC, Genitourinary Oncologist, Onkonzentrum Zurich, Switzerland
David Matheson, PhD, mED, Patient Representative, STAMPEDE trial, LIBERTAS trial, Faculty of Education Health and Wellbeing, University of Wolverhampton, Walsall, UK
Biographies:
Silke Gillessen, MD, President, APCCC, Medical and Scientific Director, Oncology Institute of Southern Switzerland (IOSI), Bellinzona, Switzerland
Aurelius Omlin, MD, Secretary General / Treasurer, APCCC, Genitourinary Oncologist, Onkonzentrum Zurich, Switzerland
David Matheson, PhD, mED, Patient Representative, STAMPEDE trial, LIBERTAS trial, Faculty of Education Health and Wellbeing, University of Wolverhampton, Walsall, UK
Read the Full Video Transcript
Silke Gillessen: I really want to welcome everyone. It's a big pleasure to open APCCC 2024. I'm Silke Gillessen, I'm a medical oncologist, and I hand over to Aurelius Omlin, who is my co-chair.
Aurelius Omlin: Good morning also from my side. It's a great pleasure to see you all here. I know some people are still at the registration printing badges, but we said we'd start on time because we have a very full morning with lots of exciting sessions to talk about.
Silke Gillessen: Perfect. And then we show you now, this is our panel, so that you know who was voting on the questions. You see it's a very big panel this time. It's very international, very interdisciplinary, and some of these people you see already on stage. And we want to really give a special thank you to the scientific committee who helped us with the questions, with the program. And I hope you're all happy, and please give your feedback. They're all here. So if you want to give direct feedback, there's a lot of breaks, as you know. The only one who's missing is Eric Small, and he's the president-elect for ASCO this year. So we are very proud he's in our scientific committee, and he had to go to an ASCO meeting, but he sends his regards.
So for all of you who are here the first time, we developed more than 180 consensus questions. And these have been developed by the APCCC Scientific Committee, and then really looked at and corrected and so on by the whole expert panel that you saw on the first slide. The voting took place prior to the conference, so everyone has a bit of time to think about the answers. And we will discuss the most interesting voting results. So very fresh. Nobody has seen them, except Aurelius and me after the sessions. And we want to really give a special thank you to our friends, Thomas Sealy, Bertrand Tombal, Karim Fizazi, and Nick James, who came to Basel for a whole weekend and really developed the questions.
Aurelius Omlin: As you may know, APCCC never ends after the meeting, because we then work on the consensus publications. For those who have not seen them, the 2022 publications are listed here. We did split it in two parts. And we have, I'm proud to say, already started on the manuscript 2024, because that always takes quite a long time. And you can help us. You will see a lot of activity on social media by also disseminating the results, because APCCC is really for you, for the people who see patients with advanced prostate cancer all around the world. So we need to make sure that the findings and the reports and the videos that will be online after the meeting get disseminated. We will talk about that a little bit later. As always, of course, such a big conference and bringing in such an amazing panel would not be possible without support from industry.
And I would like to express a special thanks to the gold sponsors, Amgen, Bayer, Lilly, Pfizer, Novartis, and Janssen Oncology. Of course, I would also like to acknowledge the silver sponsors and the sponsors that have otherwise supported APCCC 2024. Thank you. A special thanks goes also to the Città di Lugano for making it a nice and bright sunny day today. They also support the conference, which is very important. And I would also like to express our special gratitude to the Movember Foundation. We will have a special session tomorrow morning at 8:30 where we talk about the Iron Man Project. The European School of Oncology Foundation, and also PCF, support APCCC 2024. Thank you very much.
Silke Gillessen: And we also want to thank the great organization team that we have, Laura Di Petto and all the team. So if you see them outside, if you have questions, if you need help, they are really here for every one of you. And then again, for the ones who weren't here, we don't have tones, we have goat bells. This is this one. So the chair can remind the speaker that it has only five minutes left, because we really want to be in time—we are in Switzerland. One minute, sorry. And when the time is really used up, we use the cowbell.
So this is the chairs who have to do that. But I think all the speakers are already afraid of the cowbell. I hope at least Martin, right? A bit afraid. Okay, very good. So I gave you also a Save the Date. So as you know, APCCC is only every two years, so next time in 2026. But we have a new conference ongoing, that's APCCC Diagnostics, that will be February next year also in Lugano. And you see here, responsible are Ken and Stefano Fanti. So if you see them and if you're interested in imaging, diagnostics, molecular markers, you should come also in February next year. What we say now is, we come now to a very important part of the conference. David Matheson is here, like also two years ago, to give us the patient's perspective. So what are you wanting from this conference? So thank you very much, David, for coming again. Thank you.
David Matheson: Thank you very much. It's a pleasure to be here as always. What's important from a patient perspective? Well, I was asked to give some disclosures first. Pointing the wrong way. So there's my disclosures. I'm a patient representative in the STAMPEDE trial. I'm also patient representative of the LIBERTAS trial, and patient representative advocate and volunteer with Prostate Cancer UK and Prostate Cancer Research, also in the UK. Now, last time I talked about the strands that there are to a patient's life in the context. And I said, there's two strands really to a patient's life. There's illness—that's what gets them to come and actually seek treatment. But there's also wellness. And I talked about how patients can be well within the context of prostate cancer. And I showed a couple of what used to be called Wordle, but then New York Times decided Wordle meant something else. Word frames, word bubbles. And that's the two of them.
This came out of work that Catherine Matheson Monnet and I did, and it's still ongoing really, about what it is to be well in the context of prostate cancer. And as you can see, look at illness, things like side effects and so on. But look at wellness as well. And I think I'm not going to dwell on this for much longer. There's another thread I want to pick up. But if you think about it, a patient comes to you with the disease, or suspicion of the disease, fear of the disease, whatever. But they're bringing the whole life with them. And within that life there's another aspect, and that's hope. They come with hope. They come with a hope, for example, that they won't actually have prostate cancer. That's a hope which is all too frequently dashed. They come with a hope that if they do actually have prostate cancer, then certain things are going to unfold on the basis of that.
So there's hope for a cure. I hope for a cure. I was originally diagnosed, and I got my formal diagnosis in September 2012. Still with us. I've metastasized a couple of times, or my tumors have, rather than me. So I still hope for a cure. Like many others, I hope for manageable side effects. Every treatment has its side effects. I live still with the side effects of my original treatments. I live with the side effects of my subsequent treatments. All patients want these to be manageable. If you can't actually cure us, make life as livable as possible. And that's a hope which is hung on to very strongly. And this came out in the work that Catherine and I did as well, where people hope for pain relief that works. We don't want to be in agony. Discomfort we can cope with.
You can adjust to discomfort; the agony, stabbing pains, these kinds of things we don't want to have. But also, we don't want to have pain that leaves us feeling like a zombie. We want to remain compos mentis, even if it's painful. Compos mentis, in the here and now. And also with minimal side effects to the pain relief. We want clinicians who listen, we want them to actually attend to what is said. Now there's been work done over a number of years about how long it takes a clinician to interrupt a patient during a consultation. When clinicians were asked, they measure it in minutes; when patients were asked, a rather different answer. But when they're actually observed, sometimes it took seconds. If it takes seconds, that means they're not attending to what's being said.
There's a plan. Now we know that often consultations are quite hurried and rushed, and so on, but you've still got to listen. Listen to what's being said, seek to understand what it is for that patient to actually be living the experience that they're living.
Treat the patient as an individual. They're an individual with a context. They're not just a carrier of a disease, or a carrier of side effects from treatment from the disease, and so on. They have a context, they have life. We also want a society that shows greater understanding. Thanks to a lot of publicity campaigns around prostate cancer and seeking early treatment, early diagnosis and so on, there's a misconception out there that it's a good cancer. And I'm sick of having to remind people, there are no good cancers. They're all awful. Some are even more awful than others, but they are all awful. So we want a society that shows better understanding of the disease, of the effects of the treatments. It's quite a conversation stopper for someone born male to be on hormone deprivation therapy and to have emotional fragility, just burst into tears for no reason. Just there, just there, boom, and start weeping and sobbing.
And the reaction is very seldom positive. And that's something where I think greater understanding can certainly be engendered. So the thing that helps hope is a proper quality of life tool. We want things to have a purpose, and quality of life tools, in my experience, often seem to be, let's say, not so much for the benefit to the patient. So here's a little plea out for you. How about quality of life tools whose purpose is clear? I've done a fair few of these, and if I didn't do what I do besides being a patient, I'd have no idea what they're actually for. Want a quality of life tool that adapts to the patient, that doesn't assume we're all the same, because we're not. We're all individuals. Want something that's dynamic, that isn't static.
Now, if you have any experience of designing questionnaires, doing this kind of thing in principle is a doddle. Getting the right questions, that's a bit more difficult. But the principle is quite straightforward. Don't make it a Procrustean bed. We can't all be stretched to fit, or have our feet cut off, as in the myth of Procrustes. Want something that feeds back into the patient's medical record rather than being cast off into the wind, never to be seen again. Because you ask intimate questions. If somebody asks me intimate questions, do something with it. Show me that you're doing something with it. Do something for me with it, besides helping others. Very happy to help others, but help me, help the patient.
Because if this often goes into the medical records, it helps the clinician ask the right questions. It stimulates the clinician to remember this is an individual with an individual context, and so on. Helps them listen to the answers, and act upon them. And so we need a quality of life measure that benefits the patient, not just the trial, not just patients in general, but the individual, because that's what we are—we are individuals who need to be treated as such.
So to help along that way, a couple of references, one already published with myself and a couple of others, about quality of life measures from a patient's perspective, capturing the heterogeneity of the patient experience in a standardized way. It's a thousand words long. It will take you, according to ResearchGate, I think, a minute and a half to read. That depends how fast you read. And there's another one coming out in the near future with myself and a few others. So just watch out for these. So thank you very much for your attention.
Silke Gillessen: I really want to welcome everyone. It's a big pleasure to open APCCC 2024. I'm Silke Gillessen, I'm a medical oncologist, and I hand over to Aurelius Omlin, who is my co-chair.
Aurelius Omlin: Good morning also from my side. It's a great pleasure to see you all here. I know some people are still at the registration printing badges, but we said we'd start on time because we have a very full morning with lots of exciting sessions to talk about.
Silke Gillessen: Perfect. And then we show you now, this is our panel, so that you know who was voting on the questions. You see it's a very big panel this time. It's very international, very interdisciplinary, and some of these people you see already on stage. And we want to really give a special thank you to the scientific committee who helped us with the questions, with the program. And I hope you're all happy, and please give your feedback. They're all here. So if you want to give direct feedback, there's a lot of breaks, as you know. The only one who's missing is Eric Small, and he's the president-elect for ASCO this year. So we are very proud he's in our scientific committee, and he had to go to an ASCO meeting, but he sends his regards.
So for all of you who are here the first time, we developed more than 180 consensus questions. And these have been developed by the APCCC Scientific Committee, and then really looked at and corrected and so on by the whole expert panel that you saw on the first slide. The voting took place prior to the conference, so everyone has a bit of time to think about the answers. And we will discuss the most interesting voting results. So very fresh. Nobody has seen them, except Aurelius and me after the sessions. And we want to really give a special thank you to our friends, Thomas Sealy, Bertrand Tombal, Karim Fizazi, and Nick James, who came to Basel for a whole weekend and really developed the questions.
Aurelius Omlin: As you may know, APCCC never ends after the meeting, because we then work on the consensus publications. For those who have not seen them, the 2022 publications are listed here. We did split it in two parts. And we have, I'm proud to say, already started on the manuscript 2024, because that always takes quite a long time. And you can help us. You will see a lot of activity on social media by also disseminating the results, because APCCC is really for you, for the people who see patients with advanced prostate cancer all around the world. So we need to make sure that the findings and the reports and the videos that will be online after the meeting get disseminated. We will talk about that a little bit later. As always, of course, such a big conference and bringing in such an amazing panel would not be possible without support from industry.
And I would like to express a special thanks to the gold sponsors, Amgen, Bayer, Lilly, Pfizer, Novartis, and Janssen Oncology. Of course, I would also like to acknowledge the silver sponsors and the sponsors that have otherwise supported APCCC 2024. Thank you. A special thanks goes also to the Città di Lugano for making it a nice and bright sunny day today. They also support the conference, which is very important. And I would also like to express our special gratitude to the Movember Foundation. We will have a special session tomorrow morning at 8:30 where we talk about the Iron Man Project. The European School of Oncology Foundation, and also PCF, support APCCC 2024. Thank you very much.
Silke Gillessen: And we also want to thank the great organization team that we have, Laura Di Petto and all the team. So if you see them outside, if you have questions, if you need help, they are really here for every one of you. And then again, for the ones who weren't here, we don't have tones, we have goat bells. This is this one. So the chair can remind the speaker that it has only five minutes left, because we really want to be in time—we are in Switzerland. One minute, sorry. And when the time is really used up, we use the cowbell.
So this is the chairs who have to do that. But I think all the speakers are already afraid of the cowbell. I hope at least Martin, right? A bit afraid. Okay, very good. So I gave you also a Save the Date. So as you know, APCCC is only every two years, so next time in 2026. But we have a new conference ongoing, that's APCCC Diagnostics, that will be February next year also in Lugano. And you see here, responsible are Ken and Stefano Fanti. So if you see them and if you're interested in imaging, diagnostics, molecular markers, you should come also in February next year. What we say now is, we come now to a very important part of the conference. David Matheson is here, like also two years ago, to give us the patient's perspective. So what are you wanting from this conference? So thank you very much, David, for coming again. Thank you.
David Matheson: Thank you very much. It's a pleasure to be here as always. What's important from a patient perspective? Well, I was asked to give some disclosures first. Pointing the wrong way. So there's my disclosures. I'm a patient representative in the STAMPEDE trial. I'm also patient representative of the LIBERTAS trial, and patient representative advocate and volunteer with Prostate Cancer UK and Prostate Cancer Research, also in the UK. Now, last time I talked about the strands that there are to a patient's life in the context. And I said, there's two strands really to a patient's life. There's illness—that's what gets them to come and actually seek treatment. But there's also wellness. And I talked about how patients can be well within the context of prostate cancer. And I showed a couple of what used to be called Wordle, but then New York Times decided Wordle meant something else. Word frames, word bubbles. And that's the two of them.
This came out of work that Catherine Matheson Monnet and I did, and it's still ongoing really, about what it is to be well in the context of prostate cancer. And as you can see, look at illness, things like side effects and so on. But look at wellness as well. And I think I'm not going to dwell on this for much longer. There's another thread I want to pick up. But if you think about it, a patient comes to you with the disease, or suspicion of the disease, fear of the disease, whatever. But they're bringing the whole life with them. And within that life there's another aspect, and that's hope. They come with hope. They come with a hope, for example, that they won't actually have prostate cancer. That's a hope which is all too frequently dashed. They come with a hope that if they do actually have prostate cancer, then certain things are going to unfold on the basis of that.
So there's hope for a cure. I hope for a cure. I was originally diagnosed, and I got my formal diagnosis in September 2012. Still with us. I've metastasized a couple of times, or my tumors have, rather than me. So I still hope for a cure. Like many others, I hope for manageable side effects. Every treatment has its side effects. I live still with the side effects of my original treatments. I live with the side effects of my subsequent treatments. All patients want these to be manageable. If you can't actually cure us, make life as livable as possible. And that's a hope which is hung on to very strongly. And this came out in the work that Catherine and I did as well, where people hope for pain relief that works. We don't want to be in agony. Discomfort we can cope with.
You can adjust to discomfort; the agony, stabbing pains, these kinds of things we don't want to have. But also, we don't want to have pain that leaves us feeling like a zombie. We want to remain compos mentis, even if it's painful. Compos mentis, in the here and now. And also with minimal side effects to the pain relief. We want clinicians who listen, we want them to actually attend to what is said. Now there's been work done over a number of years about how long it takes a clinician to interrupt a patient during a consultation. When clinicians were asked, they measure it in minutes; when patients were asked, a rather different answer. But when they're actually observed, sometimes it took seconds. If it takes seconds, that means they're not attending to what's being said.
There's a plan. Now we know that often consultations are quite hurried and rushed, and so on, but you've still got to listen. Listen to what's being said, seek to understand what it is for that patient to actually be living the experience that they're living.
Treat the patient as an individual. They're an individual with a context. They're not just a carrier of a disease, or a carrier of side effects from treatment from the disease, and so on. They have a context, they have life. We also want a society that shows greater understanding. Thanks to a lot of publicity campaigns around prostate cancer and seeking early treatment, early diagnosis and so on, there's a misconception out there that it's a good cancer. And I'm sick of having to remind people, there are no good cancers. They're all awful. Some are even more awful than others, but they are all awful. So we want a society that shows better understanding of the disease, of the effects of the treatments. It's quite a conversation stopper for someone born male to be on hormone deprivation therapy and to have emotional fragility, just burst into tears for no reason. Just there, just there, boom, and start weeping and sobbing.
And the reaction is very seldom positive. And that's something where I think greater understanding can certainly be engendered. So the thing that helps hope is a proper quality of life tool. We want things to have a purpose, and quality of life tools, in my experience, often seem to be, let's say, not so much for the benefit to the patient. So here's a little plea out for you. How about quality of life tools whose purpose is clear? I've done a fair few of these, and if I didn't do what I do besides being a patient, I'd have no idea what they're actually for. Want a quality of life tool that adapts to the patient, that doesn't assume we're all the same, because we're not. We're all individuals. Want something that's dynamic, that isn't static.
Now, if you have any experience of designing questionnaires, doing this kind of thing in principle is a doddle. Getting the right questions, that's a bit more difficult. But the principle is quite straightforward. Don't make it a Procrustean bed. We can't all be stretched to fit, or have our feet cut off, as in the myth of Procrustes. Want something that feeds back into the patient's medical record rather than being cast off into the wind, never to be seen again. Because you ask intimate questions. If somebody asks me intimate questions, do something with it. Show me that you're doing something with it. Do something for me with it, besides helping others. Very happy to help others, but help me, help the patient.
Because if this often goes into the medical records, it helps the clinician ask the right questions. It stimulates the clinician to remember this is an individual with an individual context, and so on. Helps them listen to the answers, and act upon them. And so we need a quality of life measure that benefits the patient, not just the trial, not just patients in general, but the individual, because that's what we are—we are individuals who need to be treated as such.
So to help along that way, a couple of references, one already published with myself and a couple of others, about quality of life measures from a patient's perspective, capturing the heterogeneity of the patient experience in a standardized way. It's a thousand words long. It will take you, according to ResearchGate, I think, a minute and a half to read. That depends how fast you read. And there's another one coming out in the near future with myself and a few others. So just watch out for these. So thank you very much for your attention.