Table of contents of this Concussion Stories episode on concussion care:
00:45 Andrew Maas and CENTER-TBI
02:09 The CENTER-TBI study
04:53 Concussion statistics
07:49 Redefining traumatic brain injury
09:35 Concussion diagnosis
13:10 Improving concussion aftercare
15:57 Andrew’s post-concussion care vision
Introduction to this episode on concussion care
This is the second of 2 episodes with Andrew Maas, Coordinator of the largest study ever done on Traumatic Brain Injury (TBI). If you haven’t seen part 1 yet, we strongly advice you to watch that episode first.
In this episode, Andrew talks about the improvements he believes are necessary to current concussion care. Also, he shares a lot of details about the CENTER-TBI study itself, as well as new ways to diagnose concussions (and other brain injuries).
[0:00 Melanie ] Welcome to Concussion Stories, a Lifeyana Podcast series filled with hope. I’m here to let you know that you are not alone in your concussion recovery. I’m Melanie and I spent more than six years experimenting, training and learning, in order to heal myself from a very bad case of post-concussion syndrome. And today, I feel better than ever before.
In Concussion Stories we dig deep while discussing hopeful stories of recovery, as well as the hard stuff in the messy middle. If you’re struggling to focus, be sure to take breaks. Down in the description of each episode, you can find a table of contents in case you want to skip ahead. Let’s dive right in.
Andrew Maas and CENTER-TBI
This episode is part two of my conversation with Emeritus Professor Andrew Maas. If you haven’t listened to the first part yet, please do before listening to this part. Because this episode is really a deepening of everything we spoke about in the first one.
Now, Andrew is going to share more about the CENTER-TBI research project, its research method, about the concussion diagnosis tools that the project is looking into, and of course more about concussions and what the research has discovered. There will be some overlap with the first episode because we wanted to make sure that the story was still coherent.
Let’s spend another 20 minutes with Andrew and everything he has learned.
Welcome to the concussion stories podcast, Andrew, and thank you for being here with us.
[1:38 Andrew] Thanks. It’s a pleasure to join you, happy to contribute.
[1:42 Melanie] I’m glad to hear. So even though you are officially retired, I really want to thank you for your time because you are not one for withering away on a beach somewhere, am I right?
[1:55 Andrew] Right. And being retired doesn’t mean doing nothing. In fact, I find myself just about as busy as always.
[2:06 Melanie] How come? What are you spending your time on?
The CENTER-TBI study
[2:09 Andrew] I’m mostly spending my time on research. Research into traumatic brain injury, TBI. I lead a – I’m still leading actually – a large scale project in Europe called CENTER-TBI. I do that together with my colleague from Cambridge, David Menon, who is head of the intensive care there.
And that’s a large scale project which was supported by the European Commission, one of the funding programs. It’s like a small management business, running a study like that.
It’s been going on for just about 10 years now. Actually, the funding stopped at the end of March. But that definitely doesn’t mean the end of CENTER-TBI: much of the work is still ongoing. And we’ve been able to get some additional support to maintain the infrastructure, the data platform and much of the analysis for the next three years. So I’m very happy about that.
[3:16 Melanie] Okay. And you have been arranging funding in order to be able to do this, I gather?
[3:22 Andrew] Yes, yeah.
[3:25 Melanie] Well, that’s wonderful. Because if I read it correctly, then the project was funded by about 20 million euros before and about 175 researchers were involved?
[3:41 Andrew] Yes, the total support from the European Commission was actually 30 million euros. And… so that’s quite a lot of money.
[3:52 Melanie] It is.
[3:53 Andrew] But strangely enough, it’s never enough. So, it sounds very stupid. But budgets in the project were a bit tight. So we got from other sources also a little bit of additional funding. And we were very happy with that.
The importance of concussion research
[4:13 Melanie] I can imagine. So can you tell a bit about the CENTER-TBI project? So how come it was so important what you were doing and what exactly were the things that you were hoping to achieve – and are still hoping to achieve because as I understand it’s ongoing?
[4:33 Andrew] We can talk for a full day on that. I’ll try and summarize in a couple of sentences. Traumatic brain injury, many people don’t realize it, but it is a substantial public health burden throughout the world.
In Europe, approximately – the European Union, so that was before Brexit including the UK – in the European Union, approximately one and a half million patients are admitted each year to hospitals because of TBI. About 57,000 in the European Union die each year.
On a global perspective, the estimates are that about one out of every two people will suffer a TBI sometime during their lifetime. The total cost worldwide due to the injury itself and the indirect costs after that, because of disability, etc., they amount to about 400 billion US dollars. Which equates to about $1, or one euro, out of every 200 of the gross economic product.
So it’s a substantial problem from the global health perspective, but more in particular for the patients and their relatives who have suffered a TBI. Because many have long lasting complaints, the more severe injuries, mortality rates vary between 20 and 40%. But also in patients with less severe injuries.
Other concussion facts
And actually that was one of the things that came out of CENTER-TBI. We’ve learned that what was is still called mild TBI is in fact not so mild. Of patients who would meet the definitions for mild TBI, which is rated according to the level of consciousness, we found that approximately 50% do not reach for recovering by six months after injury. That is a tremendous amount.
And if you look at other outcomes, like health related quality of life, or post-concussion symptoms, and you include that in your scoring, then it’s about two thirds of the patients with mild TBI who still have complaints at six months. So the big message there is: mild TBI is not so mild. And 90% of all TBI is mild TBI. So if we could make a difference there, that would be a tremendous advance.
Redefining traumatic brain injury
[7:49 Melanie] So what have you been focusing on mainly with respect to the concussion, so mild TBI, field?
Letting go of mild, moderate and severe TBI
[7:58 Andrew] Yeah, let me first say we we look at all severities of TBI. We didn’t only focus on mild TBI, no we looked at the entire spectrum.
And whilst the traditional classification of severity is according to the Glasgow Coma Scale, measuring the level of consciousness, where the three categories are general mild, moderate, or severe, we deliberately did not do that. Because we felt we would not need to challenge the Glasgow Coma Scale in itself, but the coarse categorization of mild, moderate and severe – yes.
Different care paths
So we looked in particular at care paths. So we differentiated patients who were seen in the emergency room in hospital and discharged home. The second group was those who were admitted to hospital, to the ward, but not in the intensive care. And the third group was those that were admitted directly to the intensive care unit.
So yes, there are some parallels between mild, moderate, and severe there. I mean, most of the patients sent home had mild TBI. But for example, of the patients admitted to the intensive care unit, 36% were actually classified as having had a mild TBI. This to us was a surprise: we would have never recognized that.
So CENTER-TBI – it was much more than observational data collection. We also did a thorough research: what literature, what evidence is currently available? But the main two pillars were observational studies, where we did a so-called core study, collecting observational data on in total just over 4500 patients. And in those patients, they all had a CT scan.
CT scans and biomarkers
We had blood sampling for determination of biomarkers to see if that could predict outcome. But also this could help in deciding if a patient with a mild TBI should or should not have CT scan. And taking it even further, even although the CT scan was normal if those biomarkers could perhaps identify patients at risk for complaints at six months.
Genetic analysis and neuroimaging
We included genetic analysis, and we included advanced neuroimaging. So not only let’s say the standard MRI that you had, but also more advanced techniques such as what’s called diffusion tensor imaging. And we found that much more sensitive to abnormalities than the standard clinical MRI.
[9:37 Melanie] So you have been digging deep, and digging wide, in order to find this whole scala I would say…
Recording patient outcomes
[11:21 Andrew] Yes, and then, of course, we captured data of patients during their hospital stay. But more importantly, we captured very detailed outcome assessments. And that did not only include simply functional outcome, but also quality of life, questionnaires for anxiety, depression, and cognitive testing. So that was fairly all inclusive.
Making diagnosis tools available to everyone
And one of the simple things of that turned out was: CENTER-TBI was done in 20 countries in total, across Europe, and we included Israel. Most of those outcome questionnaires were only available in the English language.
So one of the outputs of CENTER-TBI, which I think is a very important one for researchers and clinicians worldwide, was translation of those outcome instruments into different languages. Not only simple translation, I’ve learned that’s only part of the story: you need to do something which specialists call linguistic validation, because the phrasing and the interpretation of words can differ between different cultures.
So that was a fairly heavy effort, which was pulled off by our collaborators in Göttingen, in Germany. And they translated the outcome instruments and linguistically validated them into the 20 languages.
Improving concussion aftercare
No matter how good medical care in the hospital is, no matter what type of miracle drug may come up at some point in time, to me the the simple but dedicated aftercare, and a system to ensure that every single patient has access to that, that will make the difference.
That doesn’t mean that that aftercare should be the same for each and every patient. No, there will be patients with more cognitive complaints, where you might consider cognitive training. There will be patients with more emotional complaints, where you can target that with the neuropsychologist. And in others, just having the listening ear of a good doctor may be sufficient.
So that aftercare can be variable, but an essential part is that it’s structured and that every patient has access to it. Now, that’s maybe taking it a stretch too far. Because if you would want to organize that for every patient, you are probably overburdening the possibilities of care. Because there are so many patients that have a mild TBI, you would overburden the system.
Predicting concussion symptoms
So one of the things that we would like to do, and we’re thinking about that, is: how can you best predict at an early phase, let’s say within the first week or maybe the first two weeks, which patients with so-called mild TBI are likely to have long lasting complaints?
And then target your structured follow-up to them. But that means seeing all patients in an early phase, and then being able to put in the triage: which patients need more intensive follow-up, and which likely don’t.
[15:40 Melanie] That sounds like a very… assuming that you can indeed identify which patients need what in this earliest stage, it sounds like a very… a huge improvement of current care.
[15:53 Andrew] Yes, I think it can be that.
Andrew’s post-concussion care vision
[15:57 Melanie] Can you share your vision about what you feel is most important in the post-concussion or concussion care system?
[16:08 Andrew] The most important to me is that the patient has a fixed point of contact to which he can not only go in case of problem, but which serves to create a structured system where problems can be identified, and intervention can be given early on. To me that is the most important. And in current medical care that is lacking.
Changing care through policy makers
[16:48 Melanie] Yes. And am I right in assuming that this would require I think, maybe also political influence? So you mentioned before, for example, the economical consequences of TBI. And we can automatically assume all of the consequences of TBI if you hear all of these numbers. People cannot go to work, people cannot function well, people have high health care bills… Is it important in order to make this happen, these changes that you think are most important, that politics realize this in order to provide funding? Or can we do it another way as well?
[17:35 Andrew] No, I think the major change would come from health care policy. And that means targeting policy makers.
[17:50 Melanie] I’m sorry?
[17:51 Andrew] Targeting policy makers.
[17:53 Melanie] Yes.
[17:54 Andrew] At the government level.
[17:56 Melanie] Yes.
Patient organizations can change care systems
[17:56 Andrew] And as I said at the beginning, patients and patient organizations are much more adept at getting that done, then scientists. Our study, CENTER-TBI, was primarily a European study. It had a sister project in the US called TRACK-TBI, but it was primarily European.
Now, Europe is a great region in the world. But within the European Union, you have all these member states, with all their own governments. And that means that in every member state, you would need to approach at the government level. And trying to harmonize that is problematic.
Changing global concussion care
This also for us as the researchers makes life fairly complex. If we go to a European body and present your case there, it will be much simpler, but that’s not the way the system works. And unfortunately here, we need to play by the system rules.
So you have started this in the Netherlands, but the fact we’re doing this interview in English means you’re reaching out to a much broader community. So if that could evolve into something European, or more global, and you would gain influence through that way, I think that would be a huge achievement. And I don’t want to push you too much. But if you see that as something that you want to accomplish, go for it.
The importance of concussion awareness
[20:01 Melanie] I hear your call to action. And yes, that’s something really that I would love to accomplish. Awareness and education, I think are the most important ways in which you can change a system.
[20:14 Andrew] Yeah, it starts with awareness.
[20:18 Melanie] So that’s what I’m trying now and let’s see how far up I can go. I think challenge accepted. And let’s see in a while.
[20:31 Andrew] Keep me updated on where I can help or advise, or whatever. Feel free to contact me anytime, more than happy.
[20:38 Melanie] Thank you very much.
What do you take away?
[20:40 Melanie] Now I would love to hear from you. What do you take away from this episode? Is there something that you can apply to your life right away? Head on over to lifeyana.com and leave your comment now.
And if you want to hear and read more Concussion Stories, actionable steps and inspiration, be sure to subscribe to the Lifeyana email list while you’re there, so that you never miss out on new materials we constantly make for you.
If you want to support this podcast, head on over to patreon.com/concussionstories. Thank you for listening to this Concussion Stories episode by Lifeyana. May you be well and may you be happy.