Multi-disciplinary collaboration in NSCLC

Helena Ullgren - Clinical Nurse Leader, Karolinska Institute, Sweden

Elin Backman Stålnacke - Oncology Contact Nurse, Karolinska Institute, Sweden

Pascale Tomasini – Oncolgist, Marseilles University, France

Virginia Harrison – Patient Representative, Open University, UK

HU:        Hi, and welcome. My name is Helena Ullgren, I’m a specialist nurse and PhD and I work in Karolinska Comprehensive Cancer Center in Stockholm, Sweden. I’m the moderator today of the third in a series regarding EGFR inhibitors and non-small cell lung cancer. Today I have a panel with me. I will start with Elin Backman, she’s a contact nurse, she also works in Karolinska Comprehensive Cancer Center in the lung oncology outpatient ward. Then I also have Professor Pascale Tomasini and she works as an oncologist and lung expert in Marseilles University in France. Then, last but not least, Virginia Harrison, Ginny, she’s a professor and works in the Open University in the UK. She’s also our patient representative today and she was diagnosed with EGFR-mutated lung cancer in 2021. So welcome all in the panel.

EB:          Thank you so much, Helena, and thank you for having me.

HU:        Today’s topic, we’re to talk about the team around the patient. If we look at the first slide would you think that we have all the team included here? Does anyone want to add anyone? It feels okay?

PT:          Yes, I think it’s quite okay. I would say a lot of the picture here because it looks like there are a lot of people around the patient and family but things are not straight. That’s, I think, the truth – we have lots of people and a lot of connections between these people and the patient.

HU:        Yes, I agree and I would say when I look into this slide, maybe this is not the case in all settings and all organisations, all hospitals are different in different countries, we don’t maybe have, for example, dermatologists in all instances. So I would agree. So let’s move on. I want to ask you, Ginny, from your perspective as a patient, what would the most important things be from a multidisciplinary perspective?

VH:         From a patient perspective there’s quite a few different things, actually. Starting from the very beginning, one of the things that we need to think about is communication because there’s quite a bit of research and also just anecdotal experience where a clinician might say one thing and a patient hears something else. So just making sure that that communication is really clear but it’s also aligned across the whole team, so the oncologist, the nurses, everybody else are speaking a common language. And just making sure that the clarity of language is there because often when you’re talking about cancer to a patient, and treatments and side effects, the clinicians are speaking in a language that they use every day whereas if you’ve just been diagnosed it’s new to you. So you just want to make sure that you’re really clear about managing those expectations about what the treatment options are or what they might look like or what side effects might be. So, first of all, just making sure that the communication is there so that you can manage expectations for patients quite well.

But then also as part of that, and part of that shared language is really including patients in the shared decision making of treatment and what that will look like. We know from quite a bit of research now that patients often don’t feel like they’re included in the way that they’d want to be with their care. So just recognising that and also knowing that patients are going to have different priorities in terms of quality of life and what they’re willing to accept in terms of side effects and how that impacts them. But just really meeting patients where they’re at and making sure you understand their context and including them in those decisions. That’s a couple of the really important things.

We’ve done quite a bit of research within the charity that I work for around what patients find particularly helpful, as well, from their care team and often what comes out top is having a named contact or a nurse that they can talk to. That really helps navigate the often quite fragmented, like in that initial image that you showed, it helps navigate that pathway. So that’s also really important, having that touchpoint that we can go to and talk to is really helpful. And also making sure our care is… it can often be quite fragmented in that way and sometimes transitions happen, whether that’s transitioning back into GP care or if that’s transitioning into palliative care or something else, just making sure that those transitions are quite smooth. Again, that’s going to have communication around it and having that team really working together to make sure that they’re all together supporting the patient.

HU:        I have some follow-up comments and I was wondering first, Pascale, regarding this with we talk about shared decision making, do you have any thoughts from your perspective as an oncologist on that?

PT:          I think it’s becoming more and more important to have this shared decision making. But for some patients this comes with a lot of anxiety because they feel like they have to decide about their own treatment strategy and they are very anxious about that. So it’s very important but also I think the patient has to be helped with that and the physician has to be as supportive as possible in order to make the decision for the patient but help the patient making the decision with him. So it’s quite difficult but I think it’s becoming more and more important. We have now lots of options for the patients, which is a good thing, but it also comes with…

HU:        I also think, from my perspective, that what we think is shared decision making and what the patients might want to impact is not always the same. But I’m going to invite Elin also, I’m going to change the slide, because I was thinking about what you said, Ginny, to have an appointed person, first point of contact. Elin, maybe you want to comment on how you work where you work but also the challenges with that regarding communication and all of this.

EB:          Yes, in Sweden we have something called contact nurses and we are to work as the point of contact. We are named to the patient, the patient has a phone number that they can reach us on. If they want to talk to me they get to talk to me the same day, usually. We are the ones to give most of the information about treatment, we give self-care advice and we are consistent through everything. We follow the patient all the way through treatment and we have regular scheduled phone or visits with the patient and try to reinforce the information and self-care advice. We try to take an active role that the patient can be informed enough to make these shared decisions because it’s always hard with information – we think we have provided everything, we have provided written information, we have spoken about it – but sometimes the patients also need a bit of time, they need to think about it and adjust. Then sometimes they still want us to be a more active participant in the decision but then they have the information and feel more comfortable leaving it to us.

HU:        I’m thinking that the system many times might have a gap and make it difficult with information because if we’re going to have good communication we need to be ready when the patient is ready and that’s not always how we plan our care and our meetings and everything.

EB:          And the right information at the right time – when is it necessary and when do we need to reinforce this message or this self-care advice.

HU:        I’m looking at this slide also, regarding the survey and the mention of anxiety, depression around this. If we’re going to angle it towards the side effects that you can have from EGFR inhibitors, this is a question to you Ginny mainly, do you think we understand what those side effects actually mean and how much it impacts the patients always? Are we too focussed on grades? What is your take on that?

VH:         Yes, you’re often talking about grade 2 or grade 3 toxicities which don’t really hit home in a real-world way. It’s very difficult to know what does grade 2 diarrhoea mean or what does a grade 3 skin rash mean for me, in my real life. I think that’s often just not getting translated and isn’t fully understood, so being able to explain that a little bit better in terms of, ‘This is what that actually looks like for your real life,’ would really help. Also just thinking about we’ve got all these different treatment options now for EGFR, which is amazing, but they’re very different in terms of their toxicity profiles and what that actually means for people and, as a patient, what your priorities might be. So, for example, with chemo plus osimertinib you’re potentially looking at people who are quite young with families. I did chemo myself and I constantly kept getting sick with bugs that my children would bring home and that was actually what floored me more than anything else. So understanding what the implications are for these treatments and what that looks like to you as a patient. And not just the side effects but also do I have to go into hospital, how often do I have to go into hospital for my treatment? What does that look like in terms of… I think the term is ‘time toxicity’ now, isn’t it? So how much time out of my day-to-day life do I need to be doing this. All of that in real world terms actually needs to be much better communicated to patients and actually using patients themselves to describe that is probably quite helpful to find that wording.

HU:        That’s also the art and the challenges of providing holistic care, I guess. To really see the context and everything around each patient. But from your perspective, Pascale, in your daily work life what would the greatest challenges be looking at gaps here? Like a lot of patients have anxiety, you experience functional disruption, what’s your thoughts on this?

PT:          It’s difficult because I was listening to your experience with the contact nurses in Sweden and I was thinking that this experience, this organisation, is not the same in European countries. Our main difficulty in France, but I think it’s not only in France, is that we would like to have more nurses like you to be here for the patients and to be really available when the patient needs to in order to find this anxiety with scanners or… yes, it would be really helpful. We have new tools with electronic applications on phones or things like that but it’s never like a nurse who takes the time to speak with the patient, it’s never the same.

HU:        You’re totally right, it’s like an organisational aspect, also, of care. I worked on the European level and I really agree and it’s so different in each country. In some countries it’s different in each hospital and setting. So we can conclude that to be able to do this you need a person that can follow you. You need to have some type of continuity of care, that the people that see you know you and your context. You were mentioning, Ginny, moving on here, all the types of treatment that there is. I want to ask you, Pascale, I think you’re the one of us that has the most insight in what’s going on as well, what’s coming in this topic. So maybe you want to comment something on that, what we have ahead of us and what there is now?

PT:          First we are having this discussion because things are moving really fast in the setting of EGFR mutant non-small cell lung cancer. We have more and more treatments but we still have to face some challenges. We know more and more about the treatment of common EGFR mutations but there are other mutations like exon 20 insertions but also others and we need to be able to cover these mutations with new drugs. It’s the case so drugs are developed especially for these rare mutations. There are lots of new types of drugs that are being developed such as antibody-drug conjugates, bispecific or even trispecific EGFR targeting antibodies that are being developed. They are also developing this area for EGFR mutant non-small cell lung cancer with promising results in early phase clinical trials.

In the next slide we can see that another gap can be passed with the combination strategies. We now are able to combine chemotherapy and EGFR TKIs, MET antibodies and EGFR TKIs, but also MET TKIs and EGFR TKIs. This is very important because we know that even if we make some huge steps and progress in the treatment of EGFR-mutant non-small cell lung cancer, we still have to face the issue of resistance to the treatment and especially EGFR TKIs when they are given alone, when it was the case not long ago. The combination strategies here or biomarker-driven strategies looking at resistance mechanisms at each step of the disease are maybe a solution in order to overcome this resistance to EGFR TKIs.

Also, we know that if we really want to cure non-small cell lung cancer we also have to be able to treat earlier stages of non-small cell lung cancer and it’s becoming the case even for EGFR mutant early-stage non-small cell lung cancer because we now have some targeted therapy strategies in this area which is also interesting. So we still have some challenges and the main one is that we want to overcome resistance to these new EGFR drugs but things are moving with the new types of drugs with new mechanisms of action and things are still going to move in a good way during the next years.

HU:        Thank you and I’m thinking on what you said in the beginning, Ginny, on communication and the need from your perspective. Do you want to comment also now with the background on everything that’s going on? All the new drugs?

VH:         Yes, I think this is where communication is really key. Actually that shared decision making, to whatever extent patients individually want to be involved in it, come in. But really understanding what the combinations mean. We’re going to get more and more choice, which is great, because actually that’s what we want, fundamentally, more choice. But with that comes big decisions and what do these side effects mean and what do these toxicities mean and what does it mean, actually, if I choose one thing for my subsequent line treatment. Really communicating all of that is going to be really, really key going forward. But it is looking really positive for us with all these new combinations and potentially new therapies, as well, coming through the pipeline. But it means communication is going to be more important.

HU:        I’m thinking from your perspective and myself, as well as a nurse, Elin, this is really precision medicine, right? We’re targeting specific mutations, we have follow-up drugs, but what would your take, as a contact nurse, be on this?

EB:          It’s really great that there are coming in new drugs and combinations. We need to be up to date all the time with the side effects and how to best manage these side effects and can we prevent some, can we manage them with self-care advice? Just help our patients to stay on their treatment for as long as possible. And just always be up to date with everything. Also we need to be better teaching, teaching the patients about the different combinations, about the side effects, how can we manage them, when is it time to call me, when can you stand back and try some self-care advice and when is it time to maybe change treatment if the side effects get to a point where they affect the daily life too much and the quality of life? So just help and guide the patients through these different combinations.

HU:        But if I would ask any one of you now also, if we’re thinking about the team here, we are part of the team like the patient, the physician, the nurse, and we mentioned other people before. But, for example, if we would talk about referring to a dermatologist or other people around, if we would advocate for that, what is the consequences, for example, if you don’t have dermatologists and experts? Does any one of you have experience of that regarding the side effects or want to say anything about that? Because I’m thinking that the care gets so specialised now so it’s a challenge, right?

EB:          I think that maybe we can make use of these digital channels that we have. Maybe we can have video conferences with a dermatologist if we can’t have one at the hospital. Just utilise the resources in different ways.

PT:          I think that we can also learn when taking care of these patients, when facing these new toxicities, whatever they are, we are learning. Keeping learning all the time, is really important and I think we can be able to manage these specific toxicities by ourselves if we are used to and for that we have to learn to. For the chance to have these kinds of e-learning or tools.

HU:        And we need to learn from each other. When the patient groups are getting smaller and smaller collaboration is really useful and important. But as we are getting towards the end of this discussion, I would also you also all if you have something you really want to add. But if I would summarise, listening to you, I would feel that EGFR in the landscape and everything that’s happening, it’s really precision medicine. It’s a lot of things happening but we also need precision in the care, to be able to really not miss, for example, a patient that is suffering a lot from side effects. And precision in communication, when does the patient want to have and when can the patient actually take in the self-care advice and things like that. So I’m thinking that it’s putting a lot of professional pressure but also in a good and a nice way because it’s so positive that so many things are happening. But does anyone want to comment on our topic today or what we have talked of, like a final remark from you? Anyone?

VH:         I did want to say something, actually. You were just talking about the importance of the dermatologist or not having one, it just brought me back to my slide about the psychology support. So one of the things that the research seems to be getting clearer on is that anxiety and depression are related to treatment adherence and patient outcomes. So actually it’s not just that we’re seeing the patient in that psychological way, it’s as a whole. So, again, just to bring the psychology back into it, having support somehow or knowing where to signpost patients to is actually really important for treatment as well as their wellbeing.

HU:        I totally agree and we touched upon that in the other videos a little bit, that if you don’t have good communication, you have support, you feel that you trust your nurse, physician and everyone, then it’s quite risky that you might not adhere to taking things as you should, if it’s oral treatment. But also adherence in maybe contacting the team when you should. So that’s a really important point and something that summarises the challenges we have also in a good way. Anyone else before we close this discussion? No, okay, but then I want to thank everyone so much for participating today. Thank you.