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A focus on the psychosocial impacts of living with blood cancer

Welcome to the second episode of VJHemOnc’s Blood Cancer Awareness Month special series! 

Today’s episode focuses on the psychosocial impacts of living with blood cancer. First, you will hear from Lorna Warwick, BA, Lymphoma Coalition, Toronto, Canada, who shares the work of the Lymphoma Coalition Global Patient Survey. Next, you will hear insights from Surabhi Chaturvedi, MBACP, King’s College Hospital NHS Foundation Trust, London, UK, who is a senior psychotherapist in hematological oncology. Finally, Charlie Craddock, CBE, FRCP, FRCPath, University of Birmingham, Birmingham, UK, will discuss the psychosocial impacts of transplantation in acute myeloid leukemia (AML). 

Date: 18th September 2024

Transcript

Hello and welcome to today’s VJ Hemonc podcast. We are a global open access video journal bringing you the latest in haematology and haematological oncology. This month is Blood Cancer Awareness Month and in recognition we will be producing a special podcast series covering a variety of topics.

Today’s episode focuses on the psychosocial impacts of living with blood cancer. First, you will hear from Lorna Warwick, who shares work of the Lymphoma Coalition Global Patient Survey that investigated the psychosocial impacts of living with lymphoma...

Hello and welcome to today’s VJ Hemonc podcast. We are a global open access video journal bringing you the latest in haematology and haematological oncology. This month is Blood Cancer Awareness Month and in recognition we will be producing a special podcast series covering a variety of topics.

Today’s episode focuses on the psychosocial impacts of living with blood cancer. First, you will hear from Lorna Warwick, who shares work of the Lymphoma Coalition Global Patient Survey that investigated the psychosocial impacts of living with lymphoma. She also delves into the psychosocial impacts of CAR-T therapy and the importance of obtaining patient perspectives to inform healthcare professionals.

Lorna Warwick

I’m Lorna Warwick and I’m the CEO of Lymphoma Coalition. Lymphoma Coalition is a global network of patient organizations that work to support those who’ve been affected by lymphoma, including CLL in our case. The coalition’s been around since 2002, so a very long time. And really, we work to make sure that patient advocacy groups worldwide have good information about the diseases and care opportunities for patients, but also have a way to share best practices, learn more about advocacy and how they can change some systems locally. And then we also do some advocacy ourselves at global and regional levels.

One of the main activities of Lymphoma Coalition to make sure that we have good information for our member organizations and others, those involved with research and science overall, as well as our medical colleagues, is really trying to fully understand the patient experience. And we do that by a global patient survey. We run it every two years and even years. Our last survey was the beginning of 2024. And really, the survey asks patients globally. About their experience so far in their care, the side effects that they’ve had, psychosocial impacts, social impacts on their regular everyday lives and how they’re actually feeling, questions about how they participate in their care, what they feel about the conversations they have with their doctors, all kinds of different touch points to get a really good good idea of what that experience is like. In 2024, we had just over 11,000 responses globally. So it’s a really good data set. And there’s lots we can learn by that. And we can break it down by country, by gender, by age, by subtype, of course, and by therapy. So all kinds of different learnings in that work.

So one of the things, as I mentioned, that we talk about all the time in the survey is looking at the psychological aspects of the disease. So how does this make a person feel? What kind of stressors is it bringing to their life? And what’s the impact sometimes on a short and oftentimes on a long-term basis? And when we’ve been doing the survey, and we’ve been doing the survey since 2008, so a very long time, we have lots of data. Often what rises to the surface is the fact that patients do experience a large amount of psychosocial stressors. And the issue with the psychosocial work is it’s often not something that they, one, they don’t always talk about it to their doctors. So that’s a concern if they’re not speaking about it, then of course nobody can help. But even if they do talk about it, oftentimes they read that the support or information, whatever it might be, that they get back from their clinical team is inadequate, basically. It doesn’t actually help lessen their fears or help them cope. And just to give you an idea, like it’s not a small number of people. We just did the survey in 2024. Earlier this year, so it ran from mid-February to mid-April. And, you know, it’s 80% of patients that are saying that they’re having some kind of psychosocial distress in the last six months that they attribute to their lymphoma or CLL diagnosis, and 90% of caregivers. And so this is a very significant issue. And like I said, we’ve been asking it multiple times through the years, we always ask about it in our survey. And it’s one area where we’re not seeing significant change. We did see, you know, a blip maybe of where it It increased a little bit in 2022 that we attribute to the pandemic, which caused everybody some extra psychosocial distress. But even though we’ve seen a decrease, it hasn’t been a significant decrease. So if this number of patients are having these kinds of experiences, there’s something that needs to be done to address and help them so that they have a better overall experience. But we also know that if patients have less psychosocial distress. Then they’re more likely to actually feel better. Like those negative experience of depression, fear and anxiety can actually contribute to those physical feelings as well.

So what can we do to help them help make them feel better? It’s not just us that thinks this is an important issue. There are clinical practice guidelines that come from ESMO, come from ASCO, come from NCCN, a number of places are really looking at this important issue for patients. So it’s great that these clinical practice guidelines exist, not so great if they’re not actually implemented in clinic. And I think there are two things that interfere with these discussions. And one being that maybe clinicians think that if they start asking more questions about psychosocial issues, they won’t be able to help their patients, right? It’s outside of the knowledge, the base that they have from being in medical school. It’s not part of their degree. It’s not part of their knowledge. It’s not part of their comfort zone. But, you know, really, when you look at the guidelines, they’re very, very similar in what they’re recommending. And the initial interventions take a little bit of time and don’t actually require a lot of thought on a doctor’s part about what to do, because if patients are experiencing a low level of distress, you know, in the scales that they’re suggesting to use as tools to measure that, all they’re suggesting is that we give patients good information. That doesn’t seem that difficult, right? It can be you hand a patient a brochure, you make sure they connect to a nurse or a patient organization or some other kind of community support if there isn’t something available in your hospital, just to make sure they have a good conversation. Oftentimes, what’s causing the distress is a lack of information about their disease and what is happening to them, not so much needing something to actually, coping skills to deal with depression or something like that is often not that. It’s just some basic information that they’re not quite understanding about the physical nature of their disease. So that is within a clinician’s wheelhouse. And, you know, asking good questions of your patient to see if they’re having these kinds of challenges. And then when you find out that they are, responding to them with saying, let’s have a conversation first about your disease. Is there questions that you have that you’re not getting good answers to, you just don’t quite understand, start with that. Then if the patient is still having some ongoing issues, oftentimes then the next best step is they just need some kind of community support, as in they like to talk to another patient or be part of a support group. And there are lots of patient organizations who provide that kind of service. Now, some of those are in person, some of them are online. Either way, it’s like connecting patients so they don’t feel so alone. Those things do not take a lot of time and effort. And so it’s something that I think is quite feasible to introduce into clinic and help patients cope.

So it’s always interesting to us when we start looking at our data in lots of different ways. If you look specifically at CAR-T therapy, within CAR-T, the, you know, the regulations. I don’t know if that’s really the right word, but the way that we set up CAR-T actually, you know, has a requirement that there be psychosocial support as part of the multidisciplinary team. And so what’s been interesting for us as we track patients that have had CAR-T is they do say that they’re getting more access to psychosocial support of some kind than they did anywhere else in their patient experience. So it does seem to be that clinicians or clinical practice is taking those recommendations and putting them into practice, which is great. But here’s some of the challenges that we see. So one is, even though that’s happening and we see, you know, some differences in access to support for these patients, we still see some high levels of distress. And so it’s like, if that’s happening, what are the issues? Why is that being triggered? And partially, one of the things patients talk about is because when their disease is aggressive and they’re moving quickly through lines of therapy, they don’t really have time to adjust to those feelings that they’re going through when that kind of service is offered. So when they’re in that specialty center getting their CAR T, instead, oftentimes these feelings overwhelm them when they’re out of that clinic. So when they’re back home and in follow-up phases, And at that point, the interventions aren’t offered to them the same way they were when they were in clinic. So I think sometimes we also have to re-examine when we’re asking these questions. Guidelines recommend that you ask patients about their psychological experiences at any key juncture in their patient experience. So, when they start a new therapy, when they relapse, and then when they start going into that survivorship phase or that follow-up phase, ideally, you would ask them about it at every clinic visit. But if you can’t do that, at least think of doing it at those major changes in their patient pathway. Because oftentimes, you know, we’re not really addressing, even if we have some systems, we’re not bringing it into the patient at the right point in their patient pathway. And I just think that CAR T is a good example of that.

The other thing we notice with CAR T is when we ask them about why the levels of distress. So why are you more fearful now than you were before? And it also has to do with way the doctors are introducing the therapy to them. So even though doctors are like, whoa, it’s a great therapy, there’s lots of hope with this particular treatment that we might get you into some form of remission. But they often have a tendency to partner that with some negative words, as in, we’re running out of options, or this may be your last chance. And it’s just watching, I think, too, how doctors are communicating about certain pieces of that journey, that they’re not causing additional stressors for a patient, or at least that they’re explaining. And the world is changing, we have more options coming in. But are you explaining what happens next? So a patient is like, maybe this is their last chance. And maybe you do need to communicate it that way. But is it really? And if it’s not, then you know, there’s always an opportunity for another clinical trial if this doesn’t work, or, or now we have another other class of drugs called bispecifics. And maybe this is for you. But having different kinds of conversations and thinking very much, very clearly about the words that you’re choosing to use when you’re having good conversations with your patient. Now, we want you to be honest and patients want that honesty. So we’re not trying to tell you not, you know, not to communicate what is actually happening. But think about that word choice. And if it is really the last thing, if you’re telling a patient, this is the last hope for them.

As I said, Lymphoma Coalition has been doing global patient surveys since 2008. And we also do some supplementary work where we do small focus groups and qualitative interviewing on certain topics, whether they’re disease related or they’re therapy related, to really understand what we learn from the survey. If there are questions that we have to delve a little bit more into what might be triggering those reactions or those thoughts from a patient. And why all of this work is important is we have so many opportunities in lymphoma, right? A lot of new therapies, there’s a lot of ongoing research, and our patients are living longer, which is fabulous to see. But if we want them to really live well, we have to think not only about the physical aspect of did we cure or did we put their disease into a remission, But how are our patients living that life? How are they actually feeling about that life they are living with the psychological issues or the emotional issues that often carry through into a longer term? But also looking at that experience they had through that clinic. So how do we make those experiences better for patients coming next so that they have better supports when they’re going through their patient pathway? But we can plug things in, right?Because there’s often common themes coming up when we’re looking at the patient pathway on a larger scale basis that really are not that complicated. Complicated because a lot of it has to do with information. And it’s like if we are making sure patients are getting very good information, there is research that has shown that they just have a better overall, not only experience, but they’re better at managing their own parts of their health, right? So they know when to call a clinic, what’s an emergency, what they can self-manage at home. They have less distress. So they’re more focused on just healing as they’re going through this experience. They’re more likely to have a positive return to their everyday life at the end of this. So we really need to look at that whole patient pathway and make sure where those gaps are appearing that we can start filling them in with the kinds of support the patients need. And the psychosocial issues are definitely one of those pieces, right? And it is something that even though it sounds like it’s complicated, sounds like it may be out of a clinic’s, you know, knowledge to solve some of those issues for them or to help them cope. It’s really not because a lot of it does come down to just, let’s give them some good information and start there and see if that helps lower that distress. If they need to talk to other people, refer them to patient organizations. Look at other community resources. Everything doesn’t have to happen in a clinic. There are a ton of patient organizations that have, you know, very good validated tools and resources that they’re using with their, that they’ve had checked by their local medical advisory committees or have been, you know, checked by organizations like ours that have access to key opinion leaders to make sure that, you know, they’re doing something really good to help patients cope. So take use, you know, it takes a community here to make sure that a patient is really as well as they can be at the end of this experience. So let’s just do this together.

Next, you will hear from Surabhi Chaturvedi, who is a psychotherapist for hemato-oncology at King’s College Hospital in London. Dr Chaturvedi provides insights into the main psychosocial challenges for patients with blood cancers. The role psychotherapy plays in the treatment and recovery process and the collaboration between healthcare professionals to provide comprehensive care to patients.

Surabhi Chaturvedi

My name is Surabhi Chaturvedi. I am the lead psychotherapist for hemato-oncology at King’s College Hospital. I work in the hematology stem cell transplant and cellular therapies unit there in London and I manage a small team of psychotherapists and psychologists who work with patients affected by any type of blood cancer from diagnosis onwards. We also offer psychological support to family members and informal caregivers. In terms of the main psychosocial challenges in people with hematological malignancies, I’d say that depends very much on the type of disease they have, whether they’re on active treatment or whether they’re on active monitoring. Because since we offer support to the whole umbrella of blood cancers, and we see a variety of patients and family members with a variety of different needs. So we see some people who are, who’ve just been newly diagnosed, and therefore they might be very much in that period of shock and adjustment where a lot of strong emotions can be present for people such as fear, anxiety. That threat of mortality inevitably is present for people when they’re newly diagnosed, even if it’s quite fleeting and they find ways of putting it to one side eventually in order to cope with treatment and maintain a more helpful and optimistic frame of mind. But at the start, all of these very strong emotions can be present for people because it can feel like their life’s been turned upside down in a day. When people are going through treatments, it’s mainly around kind of dealing with the physiological and social effects of that, because a lot of patients experience long periods in isolation, often long periods in hospital, that has its own psychological impact. During this period, one of the things we’ve observed is, without realizing it, as human beings, we anchor our sense of self and our identity on the roles we play, you know, father, mother, daughter, you know, whatever profession you do, whatever hobbies you are. These are the things that contribute to a sense of who am I. And then if none of these are available to you for a period of time, it can be really difficult and people can experience a real sense of loss of identity and kind of feeling a bit lost about who they are and what their purpose is.

People can also very much go into fight or flight mode in this phase, which means they, experience high levels of threat, but they can also almost go into a very automated state of just going with the demands of the treatment because there are so many appointments, so many places to be. Your schedule is not in your hands anymore. You’re just sort of listening to your doctors or your nurses and reporting to where you need to be. And actually, for some patients, this isn’t the phase in which they experience emotional or psychological distress about their diagnosis. For a lot of people, actually, it’s when it comes to end of treatment and they start to return to normality that a lot of emotions that might have been suppressed from diagnosis onwards can rise to the surface for people. So it’s really important that the offer of psychological support extends for people beyond treatment as well, because there’ll be a proportion of patients who will only be able to process the psychological impact of it once the treatment is done and they might be hopefully in remission. And at this point, the other anxiety that emerges for people is fear of relapse. Even if you responded very well to treatment, once you’ve experienced a threat like a cancer diagnosis, that fear of disease recurring at some point and upending your life again can be really strong for people. So people often need support dealing with that after treatment. And for people on active monitoring, who are often not thought about maybe in the same way as people who are going through very intensive treatments like stem cell transplants, that can be really challenging in its own way, because you feel like there’s this threat you’ve been told about, but you’re not on treatment at the moment, but you might need it in the future. So that uncertainty can be really hard to sit with and carry on your normal life at the same time. So I guess, yeah, there’s a whole host of different challenges and psychological support is about meeting people where they are and providing them what they need.

So in terms of even how psychotherapy can contribute to the treatment and recovery process for these patients, that varies depending on who the patient is and what their specific needs are. So like I said at the start, when people are in that phase of shock and adjustment, it’s just about sitting alongside with people, normalizing some very strong emotions they might be feeling for the very first time and kind of not understanding why I’m experiencing such high levels of anxiety and or, you know, even depression, low mood. If it’s transient, it’s quite normal in that period of adjustment and shock. So it’s about sitting alongside people, giving them a space in which these feelings can be expressed. When it’s around kind of people going through very high intensity treatments, again, it’s about helping them try and stay as hopeful as possible, while also balancing that against the very legitimate anxiety or fear that might be there about how this is going to go for me. So it’s not about denying that fear or anxiety, but trying to get them to kind of walk that fine line between hopefulness and fearfulness. And psychotherapy is a space essentially where people talk openly to somebody who’s not going to judge them no matter what they say, and isn’t going to be personally impacted no matter what they say. And I think for a lot of patients, they might not be experiencing emotional distress per se, but they benefit from sessions. Because when we talk loud to somebody in a safe space, we understand our own emotions and thoughts a bit better. So a proportion of patients might use psychotherapy for that reason, just to understand their own reactions to what’s happening to them a bit better. Of course, psychotherapists and psychologists are trained in helping people find coping strategies to deal with specific distressing mental health symptoms like depression, hopelessness, low mood, high levels of anxiety, panic attacks. If people are experiencing events as traumatic, there are ways of working with that that helps them process those traumas and be able to overcome them to a degree. There might also be a proportion of patients who get a cancer diagnosis but have always struggled with their mental health even before that and there it can be about sort of not making sure that the cancer diagnosis doesn’t exacerbate existing mental health problems too much and that both are supported at the same time. So really, it’s a space for people to speak openly in a way that they might not feel able to with friends or family because they don’t want to upset friends and family. And often there’s a pressure patients feel on being positive all the time and being always putting on that brave face and soldiering on. So actually, therapy is just about giving them a different type of conversation where they can be honest about how they’re finding things.

We collaborate with our medical and nursing colleagues all the time and other allied health professionals. at King’s College Hospital, we’re in the privileged position of being fully embedded within the hematology team. What that means is that we attend the multidisciplinary meetings where patient care is discussed. And therefore, there’s an opportunity to sort of offer a psychological formulation or a psychological way of thinking about a patient’s behavior or reactions, which helps the overall team’s understanding of the situation. We also get referrals regularly from our nursing medical colleagues, as well as our AHP colleagues like dieticians or physios. Because one of the things to remember is that distress doesn’t just wait for an appointment with a psychologist to emerge. It actually emerges in other conversations people have. So it’s incumbent on everyone to be able to pick up on that distress and make talking about mental health and emotional well-being a part and parcel of providing cancer care. And it works really well when colleagues are good at picking up at that and then offering bring somebody a referral for more specialist support. Or indeed, it works well when colleagues themselves are able to normalize and offer that validation to patients and say, look, this is completely normal. Having these feelings is completely normal given what you’re going through. Patients get so much from that validation and that reassurance that what they’re going through is not abnormal emotionally, considering that they’re already in an abnormal situation physically as a result of having a diagnosis.

Often I get asked what signs people should watch out for in order to identify people who might need that psychological support. Now, there’ll be certain obvious signs of distress. You know, if you’ve got a patient who’s very tearful, gets very upset in consultations, then that’s something that most people would pick up on. But I like to touch more on the kind of invisible distress or the hidden distress people might be feeling or emotional burden they might be carrying, even if it’s not distress that doesn’t get expressed. So say you’ve got a patient who’s actually she complying brilliantly with treatment and never complains about anything and appears to be coping really, really well. But actually, as the oncologist or hematologist, you know that even by any objective measure, what they’re going through is really hard. So it’s always useful to just check in with people actively and ask them, how are you finding everything that’s going on? It seems like there’s a lot going on. I just want to check in and find out how you’re coping with it emotionally. The best person to tell you about how they’re coping with something emotionally is the patient themselves. There are certain things that we can’t see objectively in terms of how somebody thinks or feels. So there’s nothing better than actually just making it a routine part of your practice practice, as a doctor, nurse, AHP, to just check in with somebody and say, you know, we’ve talked about your treatment, we’ve talked about your diet, whatever it might be that the consultation is for, and then have a few minutes at the end to say, you know, but I just want to know how you’re doing with everything. How’s your mood? How are you coping with all of this? And that gives people the permission to speak. And that can then lead to a conversation about would you like to be referred to a counselor or a psychotherapist to talk more about this kind of stuff.

What’s really exciting about emerging trends in psycho-oncology, particularly with hematology and blood cancer, is the sheer expanse in the number of psychological health professionals that are specializing in this. I think that’s been very visible to me in the last, you know, seven, eight years, even I’ve been doing this job. Colleagues within who specialize in supporting patients going through transplants or CAR-T or specialize in hematology in general is really great. And I think it’s fantastic that other hospitals or more and more hospitals are recognizing the need for this type of resource within hematology. On the other hand, I think in parallel, what’s really great is there’s more of an investment in developing specialist pathways in NHS talking therapies, which is a talking therapy service in every borough of the country for people with long-term health conditions and for cancer and supporting people with cancer to be part of that. So both of these things happening at the same time can only be a good thing for patients.

I think working in cancer can be really hard for us as professionals as well. So whenever I speak about psychological care for patients, I always like to touch on how do we care for ourselves as professionals, as staff members. And I think one of the things to recognize, the first step is to recognize that there is an emotional toll that working with cancer or serious ill health has on the practitioner themselves. Because I think if we don’t recognize that we are not immune to experiencing the distress that we empathize with in our patients, then actually we often ignore our own feelings and thoughts about it. Mental health isn’t something that just happens out there to the other person that we can talk about at a distance. Anybody who has a mind and feels things can experience emotional distress. And that includes doctors, nurses, healthcare assistants, AHPs, anybody who comes in contact with a patient, especially if you’re doing your job well and you are offering that really empathetic, compassionate care, you’ll inevitably be impacted by a difficult conversation with a patient where you have to break bad news to somebody or where somebody’s treatment and outcome hasn’t gone as you had hoped. Hoped and the first thing is to normalize that and actually when not and be mindful to the fact that you’re allowed to have a moment to acknowledge how sad that is and how sad you feel about it. I’m always advocating that just talk to the colleagues around you just name what’s present for you if you’ve come back from clinic after a really tough conversation with somebody and it could be tough in a different way it could be tough not just in a in a way of being sad and in terms of a poor prognosis it could be tough in the way that somebody’s stress or anxiety is making them behave in a really challenging way towards you. Maybe your patient is really confrontational and that can be tough as well. So I think it’s important that we don’t model as doctors, nurses, that we have to soldier on regardless of what’s happening, that we’re human beings too. I mean, I do this too. Sometimes I’ll come out of a session that’s been really, emotionally very heavy and I’ll go and tell my colleague that that was really tough. I’ve just come back from a really tough session, or I’ll go and take a walk around the block just to clear my head a little bit, be in the fresh air, instead of going immediately into the next task. I know that that’s really difficult because in the NHS, we’re all really, you know, stretched for time, but it helps to take just a moment to breathe and acknowledge that something was difficult before you can move on. It gives us the energy to be able to face the next thing, taking the time to do that. Another thing that can work really well is I think if our colleagues within the multidisciplinary team don’t feel like they have to either make a referral or not make a referral to us.

Another thing that in our setting works really well is people just being able to have an informal conversation with a member of the psychological therapy team. If they’re just seeking some advice on how to support a particular patient, often the patient will decline a referral or to specialist psychological services as well. And so there, what do you do? Then our role can sometimes become just supporting the practitioner, the professional who’s working with them in order to understand them a bit better and try and meet them in a way that helps everybody achieve their goals of the patient getting the treatment or going down the path that they need to or want to go down. And for the oncologist or the hematologist to be able to have conversations they need to have without challenging behavior or emotional distress getting in the way of that. So sometimes I think it works well if there’s the option to seek informal consultations with a psychological practitioner, because we are all skilled in different things. I’m not going to be able to tell by any means a hematologist what their job, but since we are trained to think about people in a different way, we might be able to offer something, a different way of thinking about why a patient is or isn’t doing something or is behaving in a particular way that people find difficult.

Finally, Charlie Craddock will talk about the decision-making process for recommending a transplant to patients with acute myeloid leukemia, particularly from a psychosocial perspective. He then goes on to discuss what needs to be improved to better address the psychosocial needs for patients having a transplant.

Charlie Craddock

This is a really important area to consider.The medical decision-making is increasingly rational, and it is a dynamic consideration of the predicted risk of relapse without a transplant and the predicted risk of toxicity, particularly transplant-related mortality. fatality. And broadly, there’s a consensus that adults with AML in first remission who have a predicted risk of relapse much north of 45%, who are fit, have a good donor, and have a predicted TRM at, say, two years of 15%, those patients are very likely to benefit from transplant. There are patients, of course, whose outcome just with chemotherapy alone is good enough that they don’t need to proceed to transplant. And then there are other patients who are simply not fit, who don’t have a donor for whom transplant’s not the right route.

But your question comes to the central question of once you’ve decided that a patient will benefit from a transplant and you’ve communicated that information to a patient, how do we help them come to terms with really what is quite a daunting procedure? It’s three and a half to four week in-hospital admission. There’s a a risk of transplant-related mortality at 100 days at 5%, 15% at two years, and of course, a significant potential long-term morbidity, from chronic graft-versus-host disease. And so, in my experience, the most effective way to manage the patient’s expectation. And how they may wish to accommodate, what is such a risky intervention is at each stage to talk patients carefully through the benefits and the predicted risks, to do that in conjunction with a clinical nurse specialist, to provide written information. If you have a psychologist input into your unit to introduce them early on, and then to give patients an opportunity to come back and see you once they’ve read the information and reflected on it three or four weeks earlier. And my experience actually is with that approach, that most patients are able to cope with relative equanimity coming in for transplant. The challenge is often actually post-transplant, when patients feel that they’ve kind of got through the world war scenario of having the transplant, then they have these regular follow-ups. So they sometimes have readmissions or they sometimes have troublesome graft versus host disease. And I think that’s when there are quite often unrecognized psychological problems. They may be compounded by, you know, there may not be much money coming into the household. There may be challenges around relationships. There are quite significant longer-term toxicities of transplant, you know, just including loss of energy or impotence. And sometimes the relationships that are so important to become quite fragile. And it’s there where I think the regular interaction with the clinical nurse specialists, with a psychological counsellor, and actually Anthony Nolan has got a lot of online information, is so important. And that’s the easy bit for us to forget.

It’s important, I think, firstly, to document more comprehensively in a prospective manner, what are the psychological complications going into transplant and post-transplant. And I think the Anthony Nolan, led by Rob Danby, are doing some very nice work in this, I think, the sequel study. I think the second piece is to allow patients ready access to help when they think it’s important. And thirdly, I think a really important area will be, are the other post-transplant interventions that will help patients? And can we assess those in randomized trials? They might be exercise, they might be yoga, they might be interventions with a nurse or a psychologist. But I think we need to be much more creative about how we care for patients, the totality of a patient’s needs after transplant. And it’s a really active area for investment, but also actually rigorous assessment in prospective clinical trials.

Thank you so much for listening to today’s podcast. We hope you enjoyed. Be sure to follow us on Twitter @VJHemOnc and subscribe to our VJHemOnc podcasts on Spotify, Apple and Podbean. Until next time!

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