Today’s interview is about the topic of shared decision making in the treatment of MS. What requirements must be met to enable shared decision making? How intensively is it already being practiced? What are the advantages and disadvantages of patients deciding together with their neurologist how their personal MS should be treated? I talk about this with Prof. Christoph Heesen, who is passionate about this topic and has already developed a number of information services for the German-speaking patient community to enable patients to make informed decisions.
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Table of Contents
Introduction – Who is Prof. Dr. Christoph Heesen?
Prof. Christoph Heesen is a Senior physician, Head of the MS-Center and Neurologist at the Medical Center Hamburg-Eppendorf (UKE), Hamburg in Germany. He was already couple of times my guest for the German MS-Perspektive podcast. We talked about stem cell therapy and for whom this treatment is a good option. Another interview concentrated on German patient information tools, established by his team that help to provide patients with information around treatment choices. The platforms include statements from patients that are positive, neutral and negative on certain options to make it balanced.
Shared Decision Making Principles
What are the key principles of Shared Decision Making (SDM) in the treatment of MS?
[00:00:39] Prof. Prof. Christoph Heesen: Shared decision-making was well defined or described first in the 90s of the last century by Casey Charles, who is a medical sociologist in Canada and she wrote a beautiful article about shared decision-making with the subtitle, “It takes two to tango”, which means it needs two people to have a dance. Of course, deciding in medicine is not dancing, but it explains that two partners need to be engaged. And this is the principle at the core of shared decision making. So there is a health expert with knowledge and there is a patient with knowledge. And both have complementary knowledge, which is necessary to reach a shared decision.
And in this process, of shared decision making you need of course to make clear what is the decision to be made, what are the options, what are the benefits and what are the risks of these options and then to look what is the best fitting option for one single person, which need not to be the scientific most sound, but the option, which is best fitting for a single person. And this is in many situations in MS the case and I think MS is a paradigmatic disease for shared decision-making, because we are talking about young people, who are in the beginning often substantially impaired, it’s not a life-threatening disease. Of course you don’t want to make shared decision-making, if you have a heart attack or something like that then you need to someone to help you, but in chronic diseases, with partially effective treatment, this is the preferred strategy and this is, well, made short why I think MS is a paradigmatic disease for this approach.
[00:02:46] Nele Handwerker: Absolutely. And you live with this at least as of now until the end of your life. So you have many, many points probably, where you have the option to use shared decision making in MS treatment.
What are the main pros and cons of Shared Decision Making (SDM) for MS patients?
00:03:06] Prof. Christoph Heesen: Well, the advantages, of course, that patients are more activated, empowered, engaged in management of their disease. They have a critical view on treatment options. They are able to appraise what is helpful and what not. They are maybe more adherent to treatments. They realize side effects in a better way. The problem is, on the other hand, how to understand and communicate the complex evidence and to get into this medical area. And this is often challenging. I’m always talking about the example of a young MS patient with two children and the husband has just left with another wife and she is working, she has two children and needs to make decisions on MS immunotherapy. Such a woman has no options to read evening per evening on MS literature. She needs someone guiding her in a way.
But this is also shared decision-making. Shared decision-making does not mean that people really read medical books, but patients need to discuss or negotiate with their physicians or health professionals how they want to decide. And it can also be a shared decision to say, I’m in a life situation, where I’m not able to make a decision, please, doctor, take over and tell me what you would recommend in this situation, best way to go. And this is maybe the counterpart, the burden of getting in the sole information field and also realizing the many scientific uncertainties. And this is also in MS a very relevant point. We have so many uncertainties from starting from the diagnostic tests over prognosis about efficacies of immunotherapies. And if you get more into this, you need also to to bear these uncertainties and this is maybe on the other side.
Another argument which is often made is that it might be very time consuming for patients, physicians and the interactions. I think the data, as we have them by now in MS and on other fields does not really support this. That is more time consuming in encounters. Maybe more time consuming in terms of well, patients need to work on materials and get to inform, but if it comes to really this decision and situations, better informed patients might get to a much quicker decision with their physicians, because they have a clearer idea of what they want and not and what are the risks and what are the benefits of treatments. And so I think that this time consuming or resource consuming argument from the health system is not really a strong one.
[00:06:06] Nele Handwerker: Yeah, totally agree. And I have to think about what are my goals, I mean, what is important for me, that’s important. It’s from the patient side.
[00:06:15] Prof. Christoph Heesen: What is always not… sorry, so easy. So clarification of your values, what is relevant for you. And this is also often a challenge for patients, because they’re not always clear about what is… What has which priority, but it will be helpful to engage in this and to, through time, have a clearer idea of what is the most relevant for me and then yes.
[00:06:44] Nele Handwerker: And of course, these things can change over time. During lifetime, it can change what is important to you, at least it did for me.
What is needed to enable effective Shared Decision Making (SDM)?
[00:06:58] Prof. Christoph Heesen: The most important thing is to inform patients. So we need to have materials, or have the possibility for patients that they get the extent of information they can handle, which at best should be differentiated, so patients can take just a leaflet and others might read a whole book or several books. And these different options are necessary and they need to understand this kind of information. This is on the, I think, on the patient side, one of the most important things.
But you need also to have a health professional, who is willing to accept this patient position, patient view. And on a superficial basis, everyone is very happy with shared decision making. But if it comes to ground and you ask a physician, well, what about if you meet an MS patient with a highly inflammatory disease, who does not at all want to have one of these drugs, but wants to have counseling on alternative medicine issues, or whatever strategies, which are not proven in randomized trials, things get much more complicated. So we need openness also from the health professional side for this, well, patient-centered approach, and I think this is maybe the two most important things.
[00:08:30] Nele Handwerker: Yes and of course, physicians are people as well and there is a reason, why you became a physician and maybe it was to help people and if you are not allowed to help persons, then that’s something you have to deal with, at the beginning, I guess. It’s not always easy, I mean, I had these discussions with people from my family and I know my cousin, she is now in the beginning of her 30s and she said, okay, yes, I try to give my best possible advice for certain situations, individual situations, but then I have to take a step back and accept, when the other side decides differently. And you can only offer your valued opinion that is normally based on scientific proof or not so proofed content.
[00:09:24] Prof. Christoph Heesen: This is actually a big problem, because the history of medicine or medical education is a lot about caring or this more paternalistic approach tries to prevent people from evil things. But on the other hand and this has also been stressed in recent years by the World Medical Association, patient autonomy and the autonomy of a person’s lives is a very high value and this is often not really considered in medicine and that needs more, especially in chronic diseases, more views on this. And which on the other hand also means responsibility from the patient’s side.
So you cannot request shared decision making and if you decide against some treatment and you have a problem in the future, then say, well, the physician did not try to convince me of a certain treatment. And this is a little bit of a problem, also in legal dimensions. So we have a patient rights law in Germany, which is very much about patient autonomy, but the legal practice is much more the physician is responsible. And if the patient took the wrong way there is the tendency of courts to say, well, he did not try to convince the patient enough. And this is the balance which we have to manage in medical legal terms and it’s not only the… It’s maybe the gold standard in handling medical decisions, but it means also substantial responsibility on the patient side.
[00:11:05] Nele Handwerker: Yeah, absolutely. And I can imagine there are some very critical situations, where it’s not so easy.
How can patients ensure their active involvement in the SDM process?
[00:11:20] Prof. Christoph Heesen: This is a very good question. I think there are different approaches or ways to that. One is, of course, being highly informed, as I said, but this is maybe not the only approach. There are also other things, the kind of how you ask in the encounters and it’s sometimes said that you can just have, can manage with three simple questions to engage in such a process. So the first one is, what is the issue to decide on? The second one is, what are the different options? Which means also the option of doing nothing or no medication. And the third one is then, what are the risks and benefits? And they should be balanced. And these are the three most important questions. And even without reading things, you can get into an encounter with that, which can help to have a more balanced patient-centered discussion.
[00:12:25] Nele Handwerker: Yeah,. And then, of course, at the end, it’s a lot of a mess. You don’t know if you are the 1% where it goes a certain way or the 99%, where it goes a typical way. And very often it’s not, it’s not set a clear, clear percentage for one or the other option. Very often it’s way in between.
[00:12:45] Prof. Christoph Heesen: A very important point, so there are statistics and in a single person they count only in a limited way and this is a burden and on the other hand also a hope in a way, saying, well, I need not to be part of this bigger statistics and even against the statistics you can decide to go this or that way, because they’re not always meeting a single individual.
And this is also important and this is one of the biggest misunderstandings of evidence-based medicine saying, well, everyone needs to be treated only to these high-end trials and only in the way, where the trial showed the benefit. Many situations we have no trials and it might be very meaningful for a given patient not to follow the result of a given trial, but to have a completely different way. And this is, well, maybe the art of medicine or whatever. It’s not just poor evidence. I think the only thing which is necessary is patients and health professionals need to be aware what is the evidence I make my decision on. It’s not adequate to decide to take on a MOLLE suite for MS and be saying this is a convincing scientific proven tool. No, it’s not at all, nevertheless, you can take such a suite being aware that the evidence is zero.
[00:14:26] Nele Handwerker: Yeah, a good example. Let’s see how this one will go in the future.
Implementation and Challenges of Shared Decision Making (SDM)
How common is the use of SDM in the treatment of MS in different countries?
[00:14:44] Prof. Christoph Heesen: This is a very difficult question, to be honest and I think I cannot really answer this, because despite the fact that everyone talks in a way about this and says, well, shared decision-making is the preferred approach. There is little research internationally and even survey research on this is not very much. Which is also a methodological problem, because if you ask patients or physicians, how do you make your medical decisions, everyone will tell, well, I decide on my own or I make the shared decision making. This is a lot about social desirability. So everyone, if he has made a decision, thinks, well, I was involved a lot and it was a thoughtful decision, this is meaningful.
It’s not meaningful to make a decision to say, well, this is the worst decision I ever made, but nevertheless I have made it. So survey issues are difficult, from the very limited data we have there, it seems that in most countries a shared approach is favored. We have some data with this kind of service in Europe, because we had a Europe collaborative group, mostly together with people from Italy and there we saw some differences. So more inclinement to patient autonomy and the shared decision making, more in the north of Europe and in the south of Europe, a little more physician as a paternalistic partner. But it’s not the way that in Italy physicians tell patients what to do and in Denmark, patients are doing their own things, but it’s a little bit in this way. And I pretty much remember that I had an ironic remark a couple of years ago from Xavier Montalban from Barcelona, who was one of the big heads in MS and he said, well, yes, in Hamburg, patients decide which treatment they have, this is not always the case. It seems that in Barcelona might be a little bit different.
[00:17:03] Nele Handwerker: Okay. And I mean, you answered it already a little bit.
Are doctors generally open to Shared Decision Making, or are there resistance and challenges?
[00:17:19] Prof. Christoph Heesen: Well, I think on a superficial level, as I said, everyone would agree that this is the preferred approach of making medical decisions, but if it comes to critical issues that the patient with a highly inflammatory disease does not really want to have an antibody treatment or whatever or even takes in an early stage of MS Natalizumab treatment or after the second relapse want to have a stem cell transplantation, then you’re bumping into lots of problems and issues and to what extent a patient wish should be filled.
And of course, it’s not always a balanced, personal, shared decision-making perspective. It’s as well, there are situations that patients are overwhelmed by the threat of the disease and then think, now I need a very rigid treatment and maybe it’s not then the ideal approach to say, well you have just MS for three months now and you read a lot about stem cell transplantation, you decided to have this treatment, but there’s a situation, where one even the physicians may say, well you have understood in a way, but the evidence by now and the risk by now do not justify that. And so that critical situation, where it’s much more difficult, I think in terms of the perspective of a given patient.
Another area is, for example, stopping also treatment. So if a patient says, well, my disease is progressing and I’m not convinced to take this, or even the other way around, if the patient wants to stick to a treatment, while it’s very obviously progressing, then to say, well, the patient decides that he wants to keep this treatment, although I’m quite convinced it does not do any good, this makes shared decision-making definitely complicated. And well, the way out of this is maybe to postpone a decision, to say, well, I see your point, my point is different. We see in half a year, we have no information and then the shared approach in a way is to postpone a decision and say, well, we are not able to make a new decision. We just need to have more information, more time past, maybe more evolution of the disease.
[00:19:58] Nele Handwerker: Yeah, yeah. I know that my neurologist is doing that with a couple of patients, where he thinks differently than the patient and they go into discussion regularly and maybe the patient changes or not, but they stay in communication and I think that is quite important.
[00:20:14] Prof. Christoph Heesen: Very important, I totally agree.
What resources or tools can physicians and patients utilize to support SDM?
[00:20:25] Prof. Christoph Heesen: Well, as I said, it’s the information tools to have the information, which is understandable. It might not be sufficient to read up things. So reading or listening to a podcast with evidence communication is one thing, maybe experiences from other patients is also meaningful, although there’s a high risk that this is biased. So, of course, you can easily get patient information on bad, very bad experiences on the internet, but if you move to more positive experiences, much more difficult. There’s very little research about this patient narrative resource, which is necessary. But another way is also to share this decision-making process not only with a physician.
An approach which we applied here years ago, in Hamburg, is to move part of the decision to a decision coach, which means that an educated MS nurse or another health professional helps a patient clarify by the clarification of values, by the understanding of the evidence. And our experience is that patients in this setting ask many more questions and there’s not a risk of feeling dull or whatever, if you’re sitting in front of the physician. In many cases, if you’re sitting in front of the physician, the most important thing is to get out as quick out as possible, at least my personal experience is the same as mine. So if I have five questions at home and I move to my given physician, I will definitely lose two or three on the way there and being aware that I want to get out there.
So having some kind of coach for clarification would be very meaningful and we would be happy to have this better implemented. In Germany, we have a very special situation, as we have only the physician, who is able to inform patients and to make decisions. We have the so-called Delegationsverbot, so you are not able to delegate parts of decision-making processes to other health professionals, which is, I think, completely out of the time. So in other countries, it’s definitely better. But I think also in other countries, it might be better to be implemented as it’s now.
There’s a very nice example from Australia, for example, it’s already, well, nearly 20 years ago that they made a very nice decision support strategy on motherhood choice, so to have a baby or not with MS. And there was a decision coach implemented, so a nurse talking about the risks and benefits of having a baby with MS and this led to a substantial reduction in decisional conflicts among patients, when they went to their physicians or made up their minds about having a baby or not. I would be happy with more research in this area, but I must say that I’m not aware that many efforts are ongoing.
[00:23:58] Nele Handwerker: Unfortunately, yes, but especially the topic on motherhood, yeah, I can totally understand that, because there are a lot of fears and if you talk about it, and then the fears are kind of fading away, most of them, because you don’t need to be a perfect mom, nobody is. And I think already that statement helps a lot and that there are options for each individual situation.
What role does patient education play in promoting SDM in MS treatment?
[00:24:32] Prof. Christoph Heesen: Well, it’s a key concept, as I already indicated. So informed choices are needed for shared decision making and informed choices need education. And this kind of education could be in different forms. So one form is, of course, very old school print. You can have groups of patients, where they can also exchange. This is also in a way old school, because everyone needs to get at a certain time point to a certain place, which is often quite difficult, because people have so many other things ongoing than getting educated. And with this, we entered the whole digital medicine world. To get information through the internet on one hand, in audios, videos, on the other hand in chats or webinars. I think it’s a very useful approach and I think it’s not used as it should be and it should be much more implemented in medical expert centers, to have virtual patient academies or whatever, so talks on different issues.
And trying to enhance also the exchange between patients, because the experiences others have is definitely helpful. We had a very good experience with that in the management of relapses, where we performed a study 20 years ago, with a group education program and moved this now to the digital world, with webinars and chats. In fact, the exchange between patients was really a major piece of relevance, also to make up my mind, well, when I have the next relapse, what is my way to manage this. So is this getting into the hospital, having intravenous steroids, or is it to increase my yoga sessions at home, which might be also absolutely adequate.
And so it’s in education materials in different formats, I think digital, is a very meaningful one, it’s exchange with other patients. And it’s maybe also second opinion, so it’s still the case that in Germany, physicians feel very upset or strange if a patient asks, well, yes, I understand, I would be happy to ask another physician about his opinion. I think we definitely should encourage patients more to say, well, maybe not 10 other opinions but one other opinion or two of someone, who is as well in the in the area involved, is very meaningful.
[00:27:23] Nele Handwerker: Yes, and hopefully it’s not, let’s say the one is totally North Pole and the other one is totally South Pole, because I had once an interview for the German podcast and that confused the patient totally and he stepped away from everything, that was not good. But let’s say in most cases, it will be much nearer by, I would say, if it’s MS specialists and just different options probably. But that’s helpful. And I think one good website to name here is, when it comes to patients share their experiences, is shift.ms, I will put it in the show notes. I think it’s from Great Britain, but that’s a good one to see a bit more filtered, let’s say, statements that are not totally biased or just personal opinions, but really experiences. That’s a good one to check for.
[00:28:25] Prof. Christoph Heesen: It offers the whole spectrum in a way and not only one certain view, but… We developed the same thing for Germany, but it’s just in German with, I think, more than 300 video clips. It’s Patientenerfahrung.mserfahrung.de, but it’s unfortunately only German.
[00:28:42] Nele Handwerker: I will put it in the German translation, of course, but for the international audience, it doesn’t make too much sense, unfortunately.
How can physicians integrate the individual needs and preferences of patients into the Shared Decision Making process?
[00:29:01] Prof. Christoph Heesen: Well, this is, of course, a part of the conversation and it helps, of course, a lot if you meet the patient, not just once, but rather have a longer developing relationship, where you realize, what is important for this person, how relevances in life change with different jobs, different partners, different hobbies, children, whatever. And really in understanding, what are the values and preferences of a patient. This is, I think, core. Of course, this is ambitious in the timeframe physicians have. You can have support tools in a way for this kind of approach. So looking at the quality of life or what is relevant for people, you can also apply questionnaires and use these questionnaires by having on a glance, an idea, what is driving this person and which includes, of course, a basic understanding of the setting, where a patient is living at.
I think it’s very, very relevant coming back to this mother educating her children alone. It’s completely different if you have such a life position than being a student aged 23 without any responsibility, with a safe financial compensation from your parents. And of course you need to handle your studies, whatever, but you’re only responsible for yourself and you can pretty much say, well, now I take half a year off and concentrate on rebalancing my life, establishing a new sport schedule. So the setting, the personal setting of the people and what is relevant for their lives, is the most important to have this from a health professional perspective enabled.
[00:31:15] Nele Handwerker: Yes. And I would just like to, dear listener, give you the advice, it’s always good to keep maybe some notes for yourself, because if you are moving around, I mean, I did so. I lived for one and a half years in Chicago, I lived for 13 years in Berlin, I moved to the North Sea. I tried to stick with my neurologist, but it’s not always possible. And I experienced or I got to know some patients who moved around a lot and lots of important information was lost. And that’s why the, let’s say, whole taking care of the disease and that it’s not too much evolving, was not possible, because there was too much lost information. And it’s always good to be active and maybe take that note, get that MRIs and I don’t know, let’s say advice from the doctors and bring it to the next one, in case you are moving around, because it can help a lot with really taking care of the disease and enjoy a lovely life.
[00:32:29] Prof. Christoph Heesen: I totally agree and this also depends on being informed and so if you haven’t understood what MRI can and what it does not can, you’re much better enabled to care for your scans. And it happens today as 20 years ago that patients go to a new radiology unit, to undertake a new MRI with the disease, which is 10 years older without the previous MRI in the head. And this is totally meaningless. The radiologist then tells the patient that he has MS, which he knows for years. And so having an idea of what is the illusion through time and caring for these images and having them in somewhere sorted.
[00:33:14] Nele Handwerker: Yes and maybe also using digital tools, where you check in your, I don’t know, where you make some tests on your cognitive function or your, let’s say, sports activities, that can help a lot, because the difference is important. Is it improving, because you are making lots of sports and you are eating more healthy and you stopped smoking, or is it decreasing, because, I don’t know, the MS activity is going bad or you become, let’s say, a bit lazy, which can happen because, your life is so full and packed of things. That’s always important for the doctor and then he or she can give you better advice and you can get a better feeling of how, let’s say, your health is changing or not. So that’s I think…
[00:34:04] Prof. Christoph Heesen: And I think, also needs shared decision making, so the extent of monitoring disease. So there are patients, who are not too inclined to have every four months an MRI or every six months and I’m not sure that in every case measuring as much as possible is helpful. So this, of course, from a physician perspective, the more information the better always. On the other hand you’re losing your implicit health understanding the more you tend to measure and I’m quite ambivalent about this whole quantify yourself attitude, which might end up in a way that only if all your parameters on your iWatch are in the green space, you feel healthy and fine.
But this is necessary to negotiate this with patients. And maybe the approach here is to define certain measurement times, where you say, I do a monitoring week now, the next will be in half a year and then you can have both sides with the implicit health understanding as well, the measurement. And I think this is something which needs to be also discussed and clarified and there’s of course a risk if you do little monitoring, then you might lose developments and then realize in a late stage, well, there was a cognitive problem evolving which I negotiated or neglected for a couple of years and now it’s very difficult to handle it.
[00:35:45] Nele Handwerker: Yes, balance, balance as always. I have just really a one page of Word document, where I have, okay, am I stable? I don’t know, there was a relapse, I was pregnant, did not took anything, so just a one pager. And for me, that’s fine, but I stayed with my neurologist since 2000, end of 2008, so he has all the important information. But I know that life can be different and you move around and yeah, but of course, balanced, that’s an important thing.
Practical Aspects and Examples
Are there age- or gender-related differences in the application of SDM among MS patients?
[00:29:01] Prof. Christoph Heesen: Well, this is, of course, a part of the conversation and it helps, of course, a lot if you meet the patient, not just once, but rather have a longer developing relationship, where you realize, what is important for this person, how relevances in life change with different jobs, different partners, different hobbies, children, whatever. And really in understanding, what are the values and preferences of a patient. This is, I think, core. Of course, this is ambitious in the timeframe physicians have. You can have support tools in a way for this kind of approach. So looking at the quality of life or what is relevant for people, you can also apply questionnaires and use these questionnaires by having on a glance, an idea, what is driving this person and which includes, of course, a basic understanding of the setting, where a patient is living at.
I think it’s very, very relevant coming back to this mother educating her children alone. It’s completely different if you have such a life position than being a student aged 23 without any responsibility, with a safe financial compensation from your parents. And of course you need to handle your studies, whatever, but you’re only responsible for yourself and you can pretty much say, well, now I take half a year off and concentrate on rebalancing my life, establishing a new sport schedule. So the setting, the personal setting of the people and what is relevant for their lives, is the most important to have this from a health professional perspective enabled.
[00:31:15] Nele Handwerker: Yes. And I would just like to, dear listener, give you the advice, it’s always good to keep maybe some notes for yourself, because if you are moving around, I mean, I did so. I lived for one and a half years in Chicago, I lived for 13 years in Berlin, I moved to the North Sea. I tried to stick with my neurologist, but it’s not always possible. And I experienced or I got to know some patients who moved around a lot and lots of important information was lost. And that’s why the, let’s say, whole taking care of the disease and that it’s not too much evolving, was not possible, because there was too much lost information. And it’s always good to be active and maybe take that note, get that MRIs and I don’t know, let’s say advice from the doctors and bring it to the next one, in case you are moving around, because it can help a lot with really taking care of the disease and enjoy a lovely life.
[00:32:29] Prof. Christoph Heesen: I totally agree and this also depends on being informed and so if you haven’t understood what MRI can and what it does not can, you’re much better enabled to care for your scans. And it happens today as 20 years ago that patients go to a new radiology unit, to undertake a new MRI with the disease, which is 10 years older without the previous MRI in the head. And this is totally meaningless. The radiologist then tells the patient that he has MS, which he knows for years. And so having an idea of what is the illusion through time and caring for these images and having them in somewhere sorted.
[00:33:14] Nele Handwerker: Yes and maybe also using digital tools, where you check in your, I don’t know, where you make some tests on your cognitive function or your, let’s say, sports activities, that can help a lot, because the difference is important. Is it improving, because you are making lots of sports and you are eating more healthy and you stopped smoking, or is it decreasing, because, I don’t know, the MS activity is going bad or you become, let’s say, a bit lazy, which can happen because, your life is so full and packed of things. That’s always important for the doctor and then he or she can give you better advice and you can get a better feeling of how, let’s say, your health is changing or not. So that’s I think…
[00:34:04] Prof. Christoph Heesen: And I think, also needs shared decision making, so the extent of monitoring disease. So there are patients, who are not too inclined to have every four months an MRI or every six months and I’m not sure that in every case measuring as much as possible is helpful. So this, of course, from a physician perspective, the more information the better always. On the other hand you’re losing your implicit health understanding the more you tend to measure and I’m quite ambivalent about this whole quantify yourself attitude, which might end up in a way that only if all your parameters on your iWatch are in the green space, you feel healthy and fine.
But this is necessary to negotiate this with patients. And maybe the approach here is to define certain measurement times, where you say, I do a monitoring week now, the next will be in half a year and then you can have both sides with the implicit health understanding as well, the measurement. And I think this is something which needs to be also discussed and clarified and there’s of course a risk if you do little monitoring, then you might lose developments and then realize in a late stage, well, there was a cognitive problem evolving which I negotiated or neglected for a couple of years and now it’s very difficult to handle it.
[00:35:45] Nele Handwerker: Yes, balance, balance as always. I have just really a one page of Word document, where I have, okay, am I stable? I don’t know, there was a relapse, I was pregnant, did not took anything, so just a one pager. And for me, that’s fine, but I stayed with my neurologist since 2000, end of 2008, so he has all the important information. But I know that life can be different and you move around and yeah, but of course, balanced, that’s an important thing.
What role does patient satisfaction play post an SDM process?sitive?
[00:37:42] Nele Handwerker: So let’s say we did a shared decision making about treatment and then I’m satisfied or not satisfied. How does this change the future approach?
[00:37:58] Prof. Christoph Heesen: Well, this touches this problem of measurement and there’s always a tendency that satisfaction is high and it’s a lot reflected in the social desirability. Of course, we have also examples of diagnostic disclosure in MS, which was terrible and satisfaction is very bad and there’s no shared decision making at all. But if you take a more or less ambitious MS unit, in most cases, the satisfaction levels are high, which is in a way a psychological mechanism. We have not really strong evidence that this kind of interaction in contrast to another interaction leads to much more patient satisfaction. As well, we have not really strong evidence that shared decision-making will lead to better health outcomes. There was just recently a large meta-analysis by the IQWiG in Germany, which is an institute for qualities in medicine, and they very critically looked on shared decision-making, how it might improve well-being of patients and the evidence is not strong. In fact it’s an ethical point, so patient autonomy and patient involvement is a bioethical need and principle beyond every health outcomes.
[00:39:27] Nele Handwerker: Yeah. Makes sense. Of course, probably…
[00:39:32] Prof. Christoph Heesen: On the other hand, we have some data. So we did a study on education patients of about the first treatment of MS and with this shared decision making patient information approach, which we applied, we realized that we have a higher adherence to treatments, because patients have a more thorough understanding of the treatment. So there is an idea that satisfaction and performance with managing the disease is improved. But this is a small hint and not very strong evidence.
Extended Aspects of SDM
To what extent is involving family members in the SDM process beneficial or problematic?
[00:40:14] Prof. Christoph Heesen: That’s also a very important point, which I think we also neglect too much, getting family, partners, friends more involved as we do by now, because a person very close to a patient as an advocate and being not so deeply involved, but also trying to understand and to enhance the position of a given patient. On the first hand, I think it’s supportive. On the other hand, you are then also bumping into all these personal conflicts and interactions which are ongoing in a couple or among family members. And the more problems there are, the more problematic this would be, of course, also for the involvement. In general, I think we should use this more and should encourage patients more to reflect who might be supportive for me for this decision and take this person with them. I think this could be definitely beneficial in most cases.
Farewell
How and where can interested people find more information on shared decision making in MS or even more generic in medical treatment?
[00:41:43] Prof. Christoph Heesen: We have the International Society of Shared Decision-Making. She has a website and a conference every two years, I think. The next will be in Switzerland, if I’m informed right. In terms of disease specific, it depends a lot from of course, a given country and the language. To be honest, I’m not aware that on international grounds, there’s really a shared decision making portal for MS patients, who is really working with this concept.
Of course, we have more or less advanced websites, for example, from the UK MS Society, which in general, a lot has this attitude that patients need to make their choices and how to inform patients about that. But with this very shared decision making, a focused approach, this is, it’s not really very prevalent. It’s maybe sold in a different way and I think the overall attitude in MS centers in larger, at least Western world MS centers is in this direction, but it’s not shouted out in this way. So I must confess I’m not really able to provide this. As an international crowd in Germany, we have a couple of tools which you can use. We put most of them of ours in the back, but I’m sorry most of them are…
[00:43:22] Nele Handwerker: German only. Yes, but I think it’s also worth checking the European MS Society and the International MS Society. At least they try to take their part on patient education and that is, as we defined, of course, one basis for shared decision making. Fantastic. Christoph, thanks a lot. It was a pleasure to talk in English to you, next time in Germany again, I guess. And I hope you out there have now a better understanding and know what is possible, but where also, let’s say, yeah, the advantages, the disadvantages, and maybe what’s possible, what’s not possible. And yeah, thanks a lot. Bye-bye.
[00:44:07] Prof. Christoph Heesen: Bye-bye.
See you soon and try to make the best out of your life,
Nele
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