SCCMPod-549 CCM: Post-ICU Syndrome and Long-Term Quality of Life

Dr. Bulloch: Hello and welcome to the Society of Critical Care Medicine podcast. I'm your host Marilyn Bulloch. Today I'll be speaking with Dr. Bram Tilburg, RN, PhD, about the article Association Between Physical, Cognitive, and Mental Health Domains of Post-Intensive Care Syndrome and Quality of Life, a Longitudinal Multi-Center Cohort Study, published in the Critical Care Medicine. To access the full article, visit ccmjournal.org. Dr. Tilburg is an intensive care nurse, psychologist, and postdoctoral researcher in the research department of Radboud University Medical Center in Nijmegen, Netherlands. Welcome.

That sounds like a very impressive background, Dr. Tilburg. Before we start, do you have any disclosures to report?

Dr. Tilburgs: No, I don't have anything to disclose and thank you for the nice introduction.

Dr. Bulloch: Dr. Tilburg, I really enjoyed reading your article. For our listeners who haven't had a chance to, I highly encourage you to go to Critical Care Medicine and read the article. It has a lot of good data.

We have known for years that being admitted to the ICU is really hard on the human body. Dr. Tilburg, can you maybe just talk a little bit more about what the impact of an ICU admission has on a patient, both in the short-term and in the long-term?

Dr. Tilburgs: Yes, of course. I have some experience in the ICU as a nurse, of course, and like it is also described in the article, that an ICU admission has a large impact on patients. They are often immobilized, they experience pain, they have loss of autonomy, and all this causes them anxiety and stress.

They have sometimes a limited understanding of the situation they're in. This makes that an ICU admission has a large impact on patients. We also organize ICU cafes in the Radboud UMC.

These are meetings for former ICU patients where they can talk with other patients who also have been to the ICU. In these ICU cafes, these people always tell me that the devastating experience they had in the ICU, especially when they were delirious or also when they were physically restrained. They have this problem not only in the months after the ICU admission, but also in the, let's say, up to a year or up to two years.

As a nurse, I didn't always realize the impact and especially the long-term impact of an ICU admission, but these cafes made me realize how difficult it is to be in an ICU.

Dr. Bulloch: I think in my perspective, I try to tell my learners that many of our ICU patients didn't even know they were being admitted to the ICU. They just sort of wake up in this scary white room with weird beeping sounds and lines everywhere, and they don't necessarily know what's going on. Certainly, that has to contribute to what you're talking about.

Your article is on PICS, and one of the statistics I found very interesting in your introduction was that 50% of our patients go on to have PICS. For our listeners who may not be as familiar with what PICS is, can you just tell us, define it for us and how we look at it clinically?

Dr. Tilburgs: It stands for the post-intensive care syndrome, and it is defined as new or worsened complaints linked to the ICU admission. We look at PICS in several domains, so in the physical domain, in the cognitive domain, or in the mental domain, meaning that you can have, because of your ICU admission, you can have physical complaints, but also have cognitive or mental complaints.

Dr. Bulloch: 50% seems like a very, very large number. It actually is kind of scary to me. Why did you feel drawn to do this study?

Dr. Tilburgs: I think that one of the things that made me do this study is that I heard in the ICU cafes, a lot of people talk about problems they have after ICU admission, and that we do not always realize what we are doing to people when they are admitted to the ICU. So I think it's quite important that as a nurse or a physician, we all want to make people better, and I think the ICU is a great place because we can help people who are very, very sick, but on the other hand, the treatment they get in the ICU has an enormous impact. We should know that so that when people are admitted to the ICU, we should do things to lessen the impact of the admission.

Dr. Bulloch: So how did your group decide to link studying PICS with the quality of life measurements that you chose?

Dr. Tilburgs: Because if we look at studies on the efficiency or the effect of an ICU admission, most of the studies look at mortality or patient survival, but I think there's more to an ICU admission and that we should also look at quality of life. Do people have a good quality of life after they have been admitted to an ICU? And it seemed logical to me that when you have the post-intensive care syndrome, when you have PICS, that your quality of life decreases or that you have a lower quality of life.

However, this wasn't really researched before our study. So that was my main interest.

Dr. Bulloch: Tell us a little bit about how you designed your study and how you conducted it.

Dr. Tilburgs: It's a sub-study of the monitoring assay study in our hospital and in seven other Dutch hospitals. All patients who are admitted to an ICU, either if it's acute or elective, they are asked to join the study and then they get questionnaires at baseline at three months, at one year and after two years. And in these questionnaires, we ask them for their quality of life.

So the quality of life at baseline, so how it was before the admission, but also how their quality of life is at three months and at 12 months. But we also ask them for the domains of PICS. So they get questionnaires on the physical part of PICS, so on fatigue and on physical complaints.

And they also get questionnaires on the cognitive complaints and on the mental complaints they have. And in mental complaints, we look at anxiety, depression, and PTSD.

Dr. Bulloch: I think that's what we, I mean, we still call it PICS, but I think a lot of us can relate to PTSD. Oh, right.

Dr. Tilburgs: So that's part of the questionnaire we use to see if people have mental PICS. And what we did then is that we collected at three months and at 12 months, we collected physical domain, the cognitive domain and the mental domain. And we looked at if these were correlated, associated with health related quality of life at three months and at 12 months.

But because baseline quality of life is really important for quality of life at three months and 12 months, we looked at the difference between baseline quality of life and three months and baseline quality of life and 12 months, the difference between those time points.

Dr. Bulloch: In your study, you use quality of life scores. And some of our listeners may be familiar with how to interpret those scores. But for those listeners who maybe aren't as familiar, how do you interpret these scores?

Dr. Tilburgs: We use health related quality of life, and we use the AQ5 day. And AQ5 day is used a lot in health related research. And the AQ5 day is a questionnaire with five questions or five domains.

And they ask questions on mobility, self-care, usual activities, pain, but also anxiety and depression. And you can score those from one to five. And then these scores are converted to the Dutch index score, meaning that when the scores are converted, you have a score between zero and one, where zero is a difficult quality of life or a bad quality of life.

And one is the best quality of life you can imagine. But also you can have scores below zero. And those scores, you should interpret it as a state worse than death.

Dr. Bulloch: Oh, wow. Okay. What would you say is, I mean, I think we would all want a score of one.

I don't know how realistic that is. Even for those of us who haven't been into the ICU, what would you say is an acceptable score?

Dr. Tilburgs: That's a difficult question, because quality of life is, of course, very personal. But I would say between 0.8 and one or so, or something like that. On the other hand, people who may have before an admission or may have had a quality of life, let's say, between zero and a half, and they are now 0.6, might be quite happy. So that is difficult to say.

Dr. Bulloch: And that's interesting that you say that, because the baseline for your patients in this study was a 0.7. So maybe just slightly below what you say is ideal.

Dr. Tilburgs: We also have to know that we have quite a large population of elective patients, so cardiosurgical patients, which may have a different health-related quality of life as the acute patients.

Dr. Bulloch: Now, your study looked at quality of life three months, so not too far after they got out of the ICU, and again in a year. How did you decide to look at those time points?

Dr. Tilburgs: That was part of the Monitore SA study. So we just wanted a value, like you said, just after ICU, but also in the long term. And so we looked at three months and at 12 months, and in the beginning, we also asked people to fill in the questionnaires at six months as well.

But then you saw that the difference between three and six months weren't that great, so we decided to skip the six months and only do the three months and the 12 months questionnaire, but also after two years. But the data from the two years isn't there already.

Dr. Bulloch: You're still collecting it.

Dr. Tilburgs: We're collecting those, yes.

Dr. Bulloch: Interesting. Now, I want to back up. Before we discuss the actual data that you got, you just mentioned something to me that I find very interesting.

You said the data between three and six months wasn't that different, and that's why you chose not to really look into that more. Why do you think it wasn't that different? Is there something that happens to the body, you know, between six months and a year that doesn't seem to happen in the first six months?

Dr. Tilburgs: I really couldn't tell you. And another problem there was, and I haven't mentioned it before, is that we had a lot of people not filling in a questionnaire when they already had filled in three years, then three months, then at six months, they didn't fill in the questionnaire or vice versa. So because of the dropouts, we also decided that maybe it was better to do just one questionnaire at three months.

Dr. Bulloch: Now, I will say you did have an impressive, at least for me, an impressive response rate in terms of how many people you were able to follow up with. How did you get such a high response rate?

Dr. Tilburgs: We have a great research team. We have research nurses who collect data at baseline and motivate people to do that at three months as well. Also that for this hospital, so for the RabotUMC, they also call people and email people at three months from please fill in our questionnaire and do it at one year as well.

So I think we put quite a lot of effort in motivating people to fill in the questionnaires and which results in quite an impressive response rate.

Dr. Bulloch: It's a very good response rate. Now tell us about what you found. What was the quality of life, you know, in the first three months after getting out of the ICU and how did that compare to a year later?

Dr. Tilburgs: If we look at the quality of life at three months, then you can see that 75% of the people had PICS in any domain. So which is even higher than the 50% we just mentioned. And also that 72% had PICS in the physical domain.

So I think that the physical domain is the dominant domain concerning PICS. 11% in PICS in the cognitive domain and 37% in the mental domain. So there was a three months.

And at 12 months, you see that these numbers decrease, but stay quite high, I must say, because at 12 months, 71% had PICS in any domain, 68% at the physical, 12% at the cognitive and 32% at the mental domain.

Dr. Bulloch: One of the things I find insightful or maybe gives us a little bit of data on what kind of patients we need to be looking for and be aware. Although with those kind of statistics, maybe we need to be very vigilant with every patient regardless. But I did notice there seemed to be maybe an education component.

It almost seemed like people with higher education did worse after they got out of the ICU.

Dr. Tilburgs: I saw that as well. And I talked about this, of course, here as well. This might be the cognitive component of PICS, but I'm speculating here, right?

But this might be the cognitive component. You could say that people who are more highly educated have more problems with the cognitive domain. That might be a reason.

Also, that's one of the limitations of this study. We have quite a lot of non-responders, and those non-responders also seem to be more ill or more vulnerable than the patients who did fill in the questionnaire.

Dr. Bulloch: I also saw a very similar trend with patients coming from a nursing home. Do you think that was that more because of the physical domain, or do you think it was more holistic with physical and cognitive?

Dr. Tilburgs: I think that's more the physical domain, but also we have to be very careful with this piece of data because the number of patients in a nursing home, and I don't have the exact numbers present, but it was very small. So it isn't really representative for this patient group, I must say.

Dr. Bulloch: Were there any other, I think, groups of people that maybe popped out to you or surprised you in terms of how- Not really surprised.

Dr. Tilburgs: We did a sub-analysis of the planned surgical patients who were mostly cardiosurgical patients, and we saw that when we look at the overall results of our study that they have, the trend is the same, but the impact of PICS on those patients is less. I think that is because patients with heart failure have quite an impact on the quality of life before the admission, and then they get their surgery and they improve after the admission. So the impact of the ICU might be more positive than for other patients who were acutely admitted to the ICU.

Dr. Bulloch: That's interesting to think about that, that actually you can feel better once you get out of the ICU, and that certainly makes sense, but depending on what you were admitted for.

Dr. Tilburgs: And what the reason was.

Dr. Bulloch: Yeah, absolutely. And I wonder if, and I know your group didn't look at this, but I almost wonder how this would look in other types of ICUs. We have burn ICUs and we have transplant ICUs.

You have to think, is there a difference between even our very niche groups of critically ill patients?

Dr. Tilburgs: Well, we're looking not for burn patients actually, but we're looking, in the future we will look at different patient categories to see if the trends we see here are the same in other categories. And one of the categories we're looking into in the coming year will be people have complaints with their stomachs.

Dr. Bulloch: Like your GI patients? Exactly.

Dr. Tilburgs: That's what we're looking for. Yes. So to see if there are difference there.

Dr. Bulloch: Interesting. So everybody be ready and watching for that research to come out of Dr. Tilburg's group. We'll be looking forward to that.

Let's talk about, we have these numbers and we have these response rates, but what does that mean clinically for these patients in terms of the data that you found? Your paper gives a lot of data about how numerically your respondents' quality of life was, but in everyday life, how does that translate? What is the clinical relevance of what you found?

Dr. Tilburgs: What we found that there are significant associations between PICS and quality of life at three months, but also at 12 months, meaning that people who have PICS in the cognitive, the mental or the physical domain have a decreased health-related quality of life. Meaning that when you have an ICU admission and you have PICS problems after the ICU admission, then your quality of life will probably decrease. Meaning that it's important for us as nurses or doctors or whoever take care of people in the ICU, that you try to limit the impact of an ICU admission, hoping that this will result in less PICS complaints after the admission.

Dr. Bulloch: I want to shift a little bit to the EQ5D. Can you tell us what that was and why your group thought it was important in your project?

Dr. Tilburgs: Well, we used the EQ5D to look at health-related quality of life and it's a well-used and well-known measure for quality of life. But of course, because health-related quality of life is such a personal experience as well, it's very difficult to translate that to a concise questionnaire. And yes, the health-related quality of life in the EQ5D is concise, but you can also question if it's the best measure of quality of life.

I don't really know. It's one of the best things you have. But for example, people who have cognitive complaints, the cognitive complaints are not that linked to the items of the EQ5D as might be the case with physical complaints or even, let's say, the mental part of health-related quality of life.

Dr. Bulloch: So let's talk about those cognitive complaints a little bit, because I feel like sometimes in the hospital, we're so concerned with the physical complaints. In the United States, I don't know if this is how it is in the Netherlands, where you are, if you've been in the hospital for a long time, we'll send you to a rehab facility to get some extra strength and do more physical therapy. Do you think we need to pay more attention to the cognitive side of things as a person is recovering?

Dr. Tilburgs: Yes, I think we should. And not only because of the pics, but also because of the impact it might have on delirium as well. And like I mentioned before, people who experience delirium in the ICU find these experiences devastating.

So we should prevent having people having delirium and cognitive training might help preventing delirium. As nurses and doctors are not really focused on cognitive therapy during an ICU admission or any hospital. And I think this would be one of the things we should be paying more attention to.

Dr. Bulloch: You mentioned something just a minute ago about how important it is to prevent pics during an ICU admission. Have you found any best practices in your own environment that seem to be successful that maybe some of our listeners can utilize where they are?

Dr. Tilburgs: I think that's one of the things you could do and which are where there is some evidence for, but only small evidence, but where are some of our patient diaries, where patients during their ICU admission, they write down or their loved ones can do that, of course, as well, where they write down what happened to them during their admission.

Dr. Bulloch: Tell me, because you're a psychologist, how does that help? What does that do for the patient?

Dr. Tilburgs: Well, a lot of patients describe that what you also told before is that patients have a they can't really remember what happened during the ICU and because of the illness they had. And that lack of memories of the ICU is very scaring, and also stressful. So a diary might help to give some perspective on the things that happened in the ICU.

But also when they have memories, which aren't really realistic, because they have, for example, delirium, then they can use the diary afterwards to see how it really was the admission. Am I making myself clear?

Dr. Bulloch: That sounds perfect. That's such a simple thing that could very easily be done. What do you do with families and patients or patients who don't have families?

And fortunately, we see that.

Dr. Tilburgs: Yeah, we see that as well. We did a Delphi study half a year ago, and we asked patients what they found important for intervention during their ICU admission. And in this Delphi day, they said that the patient diary are very important, but not only that their loved ones should write in their diary, but if their loved ones aren't able to, the nurse or the physician writes something in the diary as well.

So that could be a solution.

Dr. Bulloch: Okay, that seems reasonable to me. And I really before we close, I really want to circle back to something you mentioned the very start of our episode about these cafes that you have. Can you maybe tell us a little bit more about how you utilize those?

Dr. Tilburgs: Yes, what we do in those cafes that maybe we have those every two months, and they are visited with around, like, let's say, 30, 30 to 40 persons each time. And these are mostly couples, so patients and their loved ones. And mostly we choose a subject.

So the last time it was about about pigs, and the time before it was about delirium. So we just a specialist on the subjects gives a small presentation. And then we mostly talk about the experience of the people present on this subject.

So what stands out to me is that people always say that because they are in a group, and they see that other people have the same complaints as they have this, this helps them realizing that they are not alone. And that it's not weird that they have these complaints, because all the other people in the room have the same complaints. And this, I think that is the most helpful thing can offer with the ICU cafe, the sometimes specific suggestions we do, like writing in a diary, or go to a psychologist when you really have complaints, which you should need help for.

Dr. Bulloch: That seems like such a really nice way to provide emotional support, and maybe could have an impact on the long term implications of pigs.

Dr. Tilburgs: We have an ICU aftercare program in this hospital. So all patients are invited to discuss the ICU admission with one of the aftercare nurses from the hospital. And during those conversations, they are also invited to go to the ICU cafes, because we know that most people find this really helpful.

Dr. Bulloch: Dr. Tilburg, this has been an absolutely fascinating conversation. Our time is winding down today. Before we go, just want to give you one final opportunity to say anything that's on your mind at all about your article or about pigs.

Dr. Tilburgs: Well, an important thing is that like we showed in the article that the impact of an ICU admission up to a year after the admission is high and leads to pigs, and that we should try as nurses or doctors to lessen the impact and personalize ICU care as much as possible.

Dr. Bulloch: Wonderful. Well, Dr. Tilburg, thank you again for joining us all the way from the Netherlands. This concludes another episode of the Society of Critical Care Medicine podcast.

If you're listening on your favorite podcast app and you like what you heard, consider rating and leaving a review. For the Society of Critical Care Medicine podcast, I'm Marilyn Bulloch.

Announcer: Marilyn N. Bulloch, PharmD, BCPS, FCCM, is an Associate Clinical Professor and Director of Strategic Operations at Auburn University Harrison School of Pharmacy. She is also an Adjunct Associate Professor in the Department of Family, Internal and Rural Medicine at the University of Alabama in Tuscaloosa, Alabama, USA, and the University of Alabama Birmingham School of Medicine.

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