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Mental Health in CLL · EHA Unplugged

• 0:07
  Greetings and welcome to EHA Unplugged, the official podcast
• 0:11
  channel of the European Hematology Association EHA.
• 0:15
  This material is based on content provided by Beijing.
• 0:19
  It has been reviewed by EHA which founded, unbiased and
• 0:22
  aligned with EHA educational standards as well as reworked by
• 0:26
  EHA to create an effective educational experience.
• 0:30
  Going to be having a chat about some of the issues that actually
• 0:35
  affect our patients facing CLL. I'm Leslie Fallowfield.
• 0:41
  I'm a professor of Psycho oncology at Brighton and Sussex
• 0:46
  Medical School and. Yes, you might know me because
• 0:50
  I'm a spender. I'm I'm a hematologist from
• 0:54
  Munich. I'm happy to talk today with
• 0:57
  Leslie about the subject. I'm usually not trained in, but
• 1:02
  I think seeing patients, I think we, we, we can exchange some
• 1:06
  experiences. OK.
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  So I guess what I'd like to start by asking you, Clemens, is
• 1:13
  some of the advances that have been made in treatment terms.
• 1:17
  So this changing landscape, I mean, what difference has that
• 1:20
  made to you when you're seeing patients compared to when you
• 1:23
  were a baby doctor? Yes, right.
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  So starting in the sidel field in the, I would say late 90s, I
• 1:32
  think we were happy that we had a drug like fluid Arab being
• 1:37
  available. So the perineal locks came into
• 1:39
  the field and we are not even talking about chemotherapy at
• 1:43
  all. And so it's still questionable
• 1:46
  whether bendamustine a drug, for example, Kirsten Fischer and and
• 1:50
  myself like very much 15 years ago, it's questionable whether
• 1:56
  this drug is not using any damage at all.
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  We've heard yesterday from a young guy from Barcelona that
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  even we cannot use more than one of mutations using benamastin.
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  And from the patient's side, I think it's important.
• 2:09
  Now when patients think we would treat their leukemia, they might
• 2:15
  have pictures in mind, you know, that this means staying on the
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  warts, losing hairs and having a lot of MSS and nausea.
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  And I think this is the first misunderstanding we have really
• 2:29
  to cope with. Great.
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  So, I mean, I think it's fair to say that the sorts of things
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  that might excite a clinical scientist can be less exciting
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  to a patient initially experiencing this very
• 2:45
  frightening sort of diagnosis, especially because as we know,
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  some of these patients might be fairly asymptomatic and it could
• 2:56
  even be diagnosed via a random blood test.
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  So I wonder if I could talk to you a little bit about
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  nomenclature, the words that we use.
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  But one can only make a choice about things if you understand
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  what the whose choices are. So I mean, it's pretty
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  difficult, isn't it, for an anxious patient who's suddenly
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  being told they've got a potentially life threatening
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  disease to cope with these esoteric concepts and words.
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  I can't pronounce things, let alone the names of the drugs.
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  How do you cope with that? Yeah.
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  I mean, it's getting very difficult even to remember all
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  the names, to pronounce them correctly, especially to think
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  about the patient having never had any contact with these kind
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  of drugs. So we have to take some extra
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  time. We have to write things on a
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  sheet. I usually also use my laptop and
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  show the names so they have the chance to read the names at
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  least. But I think even before talking
• 4:00
  about a specific therapy, we tell patients they're for
• 4:05
  leukemia and it's an early stage and we sent them home.
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  So the patient's leaving a door knowing he has a leukemia.
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  And this is also, you know, a kind of excited, you think
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  situation for the patient having sort of democlass swinging above
• 4:25
  her or him. And this has to be reflected
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  also by the physician. You know that this is, we are
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  happy telling them it's early stage for us.
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  It's good news, but can still be bad news for the other side of
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  the patient and. I think that's a really
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  interesting issue, isn't it? Because if we think about all
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  the public awareness campaigns that have gone on, I think the
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  message for most of Western Europe at least has got through
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  that if you find a symptom, go and report it early.
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  And if you get early diagnosis, treatment will be initiated and
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  you've got a prospect of cure. So this goes counter to
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  everything people have heard. Hey, you've got leukemia.
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  But guess what? We don't need to treat it yet.
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  I. Mean it's it it.
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  It seems counterintuitive and I wonder if there's ever a
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  situation where a patient is so panicked by the fact that they
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  have got this life threatening disease that some people might
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  be tempted to treat a bit too early.
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  Right. I mean, there are this this kind
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  of temptation, isn't it, You know, the action mode I call it,
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  you know, just doing something. Although we know also big tries
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  CL12 try by Peter Langabins, for example, showing definitely
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  there is no use even in high risk early CLL to treat.
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  But it's also for a physician sometimes could be
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  unsatisfactory to send out a patient without doing anything.
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  This has to be learned. And so we have to take these
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  kind of mental health issues very seriously.
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  It should be said that in CLL there is not only a medical need
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  for this kind of mental health issues.
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  I think there's also a scientific gap.
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  We know it from breast cancer, from prostate cancer.
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  A recent trial in bladder cancer, for example, shows
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  exactly we have in 31 percent of patients mental health issues,
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  depression, anxiety, you know, fear to lose any, you know, also
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  welfare issues, things like this.
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  But there is no good signs in CLL so far.
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  And this can impact also on the treatment outcome.
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  There are data from other tries that it's not only the notation
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  status, it's not only TP 53. These simple issues like
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  depressive patients not taking a pill and we are using mostly
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  pills, Benito CLEX, PTK inhibitors can negatively impact
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  also on the outcome. So I think that's very important
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  to, yes. Stress, maybe we can come back
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  and talk about how well we do measure mental health issues in
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  our patients in a bit, but I want to come back to this sort
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  of like seemingly difficult concept for a patient to embrace
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  race that yes, you've got life threatening disease, but the
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  good news is we don't have to treat it.
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  So what does that patient actually do?
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  I'm sure all of you know the phrase of, you know, sort of
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  it's not watch and wait, it's watch and worry.
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  But I think we actually don't look at the personality
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  characteristics of patients sufficiently to recognize how we
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  have to potentially change the wording a bit.
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  Because for some patients, when you tell them those sorts of
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  things, they'll probably actually go away feeling
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  perfectly happy about it. They're able to almost sort of
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  ignore it, but I wonder how many fall into that category rather
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  than becoming vigilant about every ache, pain, sore throat,
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  lump or whatever. And worst of all, those patients
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  who have an anxious predisposition anyway, a trait
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  of being rather anxious, how many of those become hyper
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  vigilant, constantly going to their primary care physician,
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  reporting things? So I mean, how do we deal with
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  that, first of all? I think there is a significant
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  fraction, you know, just palpating lumps and bumps all
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  the time. And we all know these extra
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  sheets the patients are presenting to us with leukocyte
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  counts and we are a little bit annoyed sometimes.
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  But this seems to be just, you know, this is done by some
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  patients that want to gain by doing this again, some
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  self-control because they're losing control when we tell them
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  something about a still early stage leukemia.
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  But this is out of control. And I accept this for my
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  patients because I know maybe this helps them to regain
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  self-control. Although I'm as a physician,
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  maybe sometimes a little bit annoyed, you know, because
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  though it's useless whether you have 23,000 or 25,000 leukocytes
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  2 weeks later. So, So what about now sort of
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  coming on to, let's assume that the patient is going to receive
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  some treatment, but that could be continuous or intermittent.
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  Again, you've got a bit of a problem here depending on.
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  I would suggest not just the characteristics of the disease,
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  but the characteristics of the patient in how they can accept
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  that. Yeah.
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  I mean, we, we, we usually say a time limit therapy is an extra
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  bonus point for the therapy. I mean, we all know that we have
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  to to base a treatment decision on, you know, usually molecule
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  features, IG3 stairs, TP3 stairs, things like this.
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  In the end we make a choice, but there are patients that are very
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  happy with time limit therapy knowing this will come to an end
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  after 12-15 months, something like this.
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  But also patients being on Vanobi for example, they are a
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  little bit, there are some patients being horrified when
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  you know the treatment comes to an end, whether they are safe
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  enough. When we stop, then sometimes
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  very peculiar things start that patients are asking for MID
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  assessment. We again just heard this is
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  usually not routine practice, but still they want to know
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  exactly about their disease status MID assessment is asked
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  for. And so this we try to convince
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  them this is maybe not the routine practice and this is
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  maybe useless within clinical trials.
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  We do it, but all sort of clinical tries.
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  It's it's it's all done. On the other hand, we know there
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  are there are treatments, continuous treatments as you
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  just mentioned. This is when I tell the patients
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  you do take this pill lifelong. Lifelong always sounds
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  frightening. I usually then say OK, an anti
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  hypertensive drug you're also taking lifelong but you would
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  not think about stopping a hypertensive pill.
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  So try to make this kind of pictures or similarities in
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  medicine so that patients accept this kind of treatment.
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  Also, continuous treatment can be it's a safety pill.
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  Let's put it this way, every day you know they are taking.
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  This can also be can also gain or the patient can gain
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  reassurance by taking a pill every day.
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  Now that's an interesting sort of point really, isn't it?
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  Because obviously anxiety that this disease might sort of kill
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  me anytime soon is a psycho noxious experience for anyone.
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  But there are better ways to treat anxiety than to put people
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  on expensive drugs with potential side effects, aren't
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  there? And I just wonder how many
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  people have within their centers good well integrated
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  psychological support services that patients ought to
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  automatically be referred to, I would suggest.
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  I think there is still a major lack.
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  Also Germany that we routinely don't refer patients to
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  psychology specialists. There are some patient advocate
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  groups we and support groups. We just give addresses and we
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  just send them there. But we have for psychology
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  support, we have long waiting lists.
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  Also I think this is still an unmet medical need.
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  You know that we have to take these kind of disorders being
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  induced by by the leukemia diagnosis, that this has to be
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  covered also in a way by by good psychology support in the
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  system. I mean, it's quite interesting
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  really, isn't it, that I think some patients feel, you know,
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  but I'm not mad. And I, I, that's why I think it
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  should be integrated that this is an important part of care,
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  because we are always dealing with uncertainty in this issue.
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  And I think the general public actually do believe medicine to
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  be much more of an exact science than it actually is.
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  As we all know, facts are only sort of hypothesis that are
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  either refined or supported by the latest research data.
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  And trying to cope and deal with that, I think is pushy,
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  difficult. And I'm going to tease you with
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  another sort of thing about uncertainty.
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  And that is there are quite a lot of data now coming in
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  different areas showing that the tolerance of uncertainty of the
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  clinician who is talking to the patient will also affect what
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  the treatment decision is. Because if you as a doctor are
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  highly intolerant of uncertainty, you're more likely
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  to. But early on, I think provide
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  more aggressive therapy, order up more tests.
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  That's correct. I think we learned an expression
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  during the COVID pandemic. This is resilience, right?
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  And I think that this is also important on the physician side
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  to gain resilience and this this can be trained and to, you know,
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  just keep cool and bring the message to the patient, but not
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  just getting nervous about the leukemia per SE and starting
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  irrational treatments too early or things like this.
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  So. Do you ever feel blamed by the
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  patient if in fact you've reassured them and then the
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  disease does? Yeah, I mean, also you have to
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  be also resilient on this, you know, because as a physician,
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  you might get blamed to be inactive and doing nothing.
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  But it's a matter of convincing. I usually try to convince them,
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  you know, there is no need because we know exactly you will
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  not benefit when we start too early, we might even harm you.
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  But this depends then also on the patient's side, you know,
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  whether the patient is accepting this kind of scientific
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  knowledge from the physician. So communication is really very
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  important, isn't it? And I guess there's also a
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  social legal moral imperative now to be more patient centered,
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  to involve patients more in their decision making.
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  But I guess I come back to where I started here, that it is
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  phenomenally difficult to explain the rationale and logic
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  for the sorts of treatment management policies that you
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  feel from the data that we have are most appropriate.
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  So trust in the doctor becomes vital.
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  If a patient doesn't really understand things because the
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  concepts are too difficult or challenging, trust in the doctor
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  is important. And we know again that if the
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  patient doesn't understand, if the patient actually doesn't
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  trust the healthcare professionals advice, they're
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  very easy prey for the purveyors of snake venom on doctor Google.
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  Doctor Google will come up with all sorts of brilliant ways to
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  treat CLL. Does that happen in your
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  practice very often if you say I'm not going to treat.
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  You yes, I mean, patients are also in the Internet screening
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  for some interesting things and they might even find some, some
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  things like, you know, drink a lot of green tea or things like
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  this. And I when they asked, it was
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  one of the frequent questions they asked me is can I do
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  anything instead of just waiting?
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  You know, are there any, you know, paramedical things, you
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  know, paramedicine things I can take?
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  So that's really good. So rather than waiting for
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  something to happen, here are a few things proactively that will
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  benefit you anyway, like exercise and diet and
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  everything. Excellent.
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  I'm very glad I'm not a hematologist.
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  I just actually talk about how you should talk to patients
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  about these things. But I would like to just step
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  back again to look at what the levels of anxiety and depression
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  in patients actually are. There aren't very good data in
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  fact, in CLL. So any of you out there who are
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  keen to do some good new projects, I think it's a really
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  important area to research, particularly because anxiety and
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  uncertainty, they're very sort of closely linked.
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  There has been systematic reviews of the data that are out
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  there. They're not desperately good
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  because lots of people use different sorts of assessment
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  measures. But what we do know is that
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  anxiety is probably between 1/4 and 1/3 of patients that have
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  measurable anxiety and that's whether they're on what watchful
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  waiting or on treatment. But depression is about 25%
• 19:00
  significantly higher in the treatment group.
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  Now this could of course be because patients actually who
• 19:08
  have to start treatment or further lines of therapy
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  recognize that their disease is perhaps more serious.
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  Now I know that there's some interesting work that's been
• 19:22
  going on looking at the molecular underpinnings that why
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  we should really be measuring depression particularly.
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  There's indeed some early work, and I know that many people are
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  sitting in this audience being very interested also in
• 19:38
  molecular science. I'll just give you 3 examples.
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  So we know for depression and bipolar disorders, there is a
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  snip for BCL 2. So the snip Rs 956572 you can
• 19:59
  write this down is associated with an exchange or turbulences
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  in the calcium household and this is associated with.
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  Depression. So we all know that BCL 2 is one
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  target in CLL and so it might be worthwhile also studying these
• 20:19
  effect. Second example, we know one of
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  the classics in treatment of depression is lithium.
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  Lithium increases the BCL 2 levels.
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  So you might conclude blocking BCL 2 might do something else,
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  decreasing BCL 2 levels that we know, but also might foster
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  depressive episodes. And there are other genes, it's
• 20:47
  so-called BCL 2 associated ethanol gene, back BAG back one,
• 20:54
  back two. It's also associated with
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  depression. And you don't have to be a super
• 21:00
  scientist in order to think that, you know, perturbating the
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  BCO 2 pathway with our modern drugs.
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  We might also impact on these kind of this case is a MAPP
• 21:12
  kinase, a social pathway that there can be something going
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  well or wrong depends. But I think we have really to
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  invest more science also in mental health issues.
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  We could integrate this in randomized clinical trials to
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  see whether we really decrease or increase depression disorders
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  and we could even associate this with molecular markers.
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  I think this is an interesting topic.
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  There are in other fields of Cancer Research first tries
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  investigating this and I would just, you know, just fuss a
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  little bit. This should also be done in the
• 21:54
  CRFL. Absolutely.
• 21:56
  I think that's important. And I mean, anything that sort
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  of effects or improves anxiety and depression can only be
• 22:04
  helpful on multiple terms, particularly, as you know, we're
• 22:08
  very triumphant about the fact that there's less need now for
• 22:12
  chemotherapy. But oral therapies, of course,
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  do depend on patients taking the pills.
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  And depressive patients often don't take them.
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  They don't adhere. So if we can sort of like
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  summarize some of this, I mean, we could have probably stayed
• 22:28
  here all day talking about these things, but I think sort of the
• 22:32
  communication side really needs sort of addressing properly and
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  thoroughly. 1 needs to be empathic and understanding,
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  which I'm sure you are. But also there isn't like one
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  set patter that is going to actually fit all patients given
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  their underlying and pre-existing personality
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  predispositions. I think being honest is
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  important, but that demands also offering reassurance and
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  thinking about the words being used.
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  You know, I think we should get rid of a watchful waiting for a
• 23:08
  start. You're doing active
• 23:10
  surveillance. That sounds much more positive
• 23:14
  to the patients, but also sort of I think reducing the
• 23:18
  patient's uncertainty can only be achieved by sort of probably
• 23:23
  again, saying, you know, honestly, honestly, honestly, we
• 23:26
  don't want to start treatment until we feel it will genuinely
• 23:30
  benefit you. And that's why we will be
• 23:33
  measuring things. You don't have to keep on
• 23:36
  checking every few hours whether you've got a lump or a sore
• 23:40
  throat or whatever. So I wonder if there's anything
• 23:43
  you'd like to sort of add to Clemens about what you feel
• 23:47
  particularly for maybe younger people who haven't got a lot of
• 23:50
  experience in dealing with this concept?
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  I think it's also the wording very, very important.
• 23:57
  So I also never say watch and wait.
• 23:59
  I always say watch and live. That's my my expression.
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  I always say to the patients, you know, if you have questions
• 24:07
  after we've talked because questions come later, just give
• 24:10
  me a call or just come back to the office to get this kind of,
• 24:14
  you know, feedback loop and reassurance on the patient's
• 24:17
  side. And I think actually there's
• 24:19
  just one little thing I'd add to that also is that I think it's
• 24:23
  always worthwhile checking online what the charities, what
• 24:28
  are the things your patients are looking at because very often
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  these don't, they show concordance with what you're
• 24:36
  saying and that will increase uncertainty even more.