Identification and Management of Post-ICU Syndrome

Podcast Transcript

Dr. Alex Rae-Grant:  Neuro Pathways, A Cleveland Clinic Podcast for Medical Professionals exploring the latest research discoveries and clinical advances in the fields of neurology, psychiatry, neurosurgery, and neuro rehab.

In the US, approximately six million critically ill patients are admitted to the ICU every year, about 5 million of them now survive. In today's episode of Neuro Pathways, we're discussing recognition and management of post-ICU syndrome in patients and families. I'm your host Alex Rae-Grant, Neurologist in Cleveland Clinic's Neurological Institute. In an effort to explore this emerging phenomenon, I'm pleased to be joined by Dr. Joao Gomes. Dr. Gomes is a Vascular Neurologist, Neurocritical Care Specialist and Head of the Neurointensive Care Unit at Cleveland Clinic's Cerebrovascular Center and Neurological Institute. Joao, welcome to Neuro Pathways.

Dr. Joao Gomes:  Thank you, and thank you for the invitation.

Dr. Alex Rae-Grant:  Let's start with an easy question. Where are you from and how did your career lead you to the Cleveland Clinic in Cleveland?

Dr. Joao Gomes:  Yeah, well, I have to go back a few years, but originally from Caracas, Venezuela, where I completed my medical training. I came to the US back in '98 to do further training in neurology and as you mentioned in neurointensive care. And so I was looking to start my career in academic medicine. An opportunity came up here at the clinic, and obviously, given the prestige and the resources and the patient population, so it was a very obvious choice for me to come and enjoy the beautiful Cleveland weather.

Dr. Alex Rae-Grant:  Glad to have you here enjoying it with us. Today's conversation involves a critical topic that really affects millions of people in the ICU each year. Can you go back and describe for our listeners what exactly post-ICU syndrome is and how it presents and how it can affect the patient's recovery?

Dr. Joao Gomes:  Yeah, certainly. So one has to go back primarily to literature from medical and surgical ICU populations. And what some of our colleagues in those units started noticing was that patients who survive, let's say an episode of sepsis or severe ARDS or respiratory failure, would go back to their outpatient clinic and they had a lot of complaints that were not related to the primary reason for admission. That's to say they had a lot of anxiety and post-traumatic stress disorder, cognitive problems, even physical disability that was not explained by the reason for their admission. And so that conglomerate of symptoms and signs is what has been labeled as post-ICU syndrome.

Now we've recognized sort of manifestations in three big areas. One, as I mentioned, is the physical aspect of this. Many of these patients have difficulty walking, difficulty with balance. Their stamina is certainly decreased after a major critical care episode. Second large area is psychiatric, so the incidents of depression, PTSD and anxiety is quite high. As high as 30% of patients admitted to a general medical or surgical ICU experience symptoms that would meet diagnostic criteria for one of these major psychiatric disorders. And the third component is in the cognitive arena.

Just to give you an idea, again, patients who were admitted with primarily severe sepsis or septic shock and/or ARDS, over 20% of them had some degree of cognitive dysfunction, special by different scales. But what's interesting is that most of them scoring at the same level as patients who had suffered traumatic brain injury and about five to 10% of them actually scoring the level of where an Alzheimer's disease patient would score. And again, these were patients whose reason for admission was not neurologic at all.

So we then know the mechanisms, but there is certainly something going on whether it is a sleep deprivation, just a systemic inflammatory response. Some of the medications that we use for a combination of all of these, perhaps hypoxia in some of these cases, that definitely leads to cognitive decline and all the other symptoms that I just mentioned.

Dr. Alex Rae-Grant:  Interesting. So it's safe to say that many neuro-ICU patients have already suffered from a brain-related injury, but would you say those patients are more susceptible to these kinds of post-ICU syndromes than med/surg ICU patients?

Dr. Joao Gomes:  Right, right. The short answer is with a no. With a no, because there really hasn't been any serious research in our population trying to look at risk factors, incidents, et cetera. And that can tell you a little bit about our own experience and what we're doing here. Because many of the symptoms that I mentioned are the kinds of symptoms that you would expect to find in someone with a significant devastating brain injury.

One of the early questions that we were faced with is how can we tease apart what's due to the brain injury and what's due to the post-ICU syndrome. And after various meetings with the statisticians here, the quantitative health scientists, it became everything that we had to control for that. So, so far we went back, we have about 3000 patients that we have identified, who admitted to our ICU with some sort of cerebrovascular diagnosis, be it ischemic stroke, intracerebral hemorrhage, subarachnoid hemorrhage, et cetera. And we have the C-severity score from a neurological standpoint. That's their NIH Stroke Scale or the ICH Score or the Hunt and Hess grade for example.

But we also have the APACHE score and APACHE measures the disease severity from a more systemic or critical illness standpoint. And we're fortunate enough that in 2015 here at the clinic, we started measuring elements of what you know as the Knowledge Program, which basically is outcome data. And outcomes in sort of rehab and physical dimension, but also in terms of cognition and self-reported outcomes in general. So it's not ideal, but we do have some degree of outcomes there. And what we're hoping to do is to take those patients that were admitted to our ICU with these diagnosis and take a control group of patients with similar NIH Stroke Scale and ICH and Hunt and Hess scores, but who were not admitted to the ICU or spent a very short period of time in the unit and try to isolate what the effect of being admitted to an ICU with a brain injury really adds to the symptoms that we find or this post-ICU syndrome.

So right now we then know the difference. We don't know if they're more susceptible or not. We know about some risk factors, for example, delirium in the general medical population increases the risk of post-ICU syndrome. But we don't know if that's true for our patient population. So we are hoping to find more as our story progresses.

Dr. Alex Rae-Grant:  While your group is working on understanding the phenomenon better, which sounds like a great thing to be doing, are there treatments we're trying now related to the idea of a post-ICU syndrome in our population?

Dr. Joao Gomes:  Yeah, so one of the things that we realized is that we don't have a good place for these patients to follow up. Many of them end up in the LTAC and as you know it's very challenging for them to be transported here for an outpatient appointment. And to be honest with you, the reason why I went into critical care, even though I'm a neurologist, is I didn't want to see an outpatient again in my life. But then I realized, probably it's not the right approach and I'm not alone there. Most intensivists don't have follow up clinics.

So one of the initiatives that we have started is a post-ICU clinic. Because as I mentioned, many of these patients end up going to a rehab or an LTAC, it's very challenging for them to come here. And because at the CV center, we have a longstanding tradition of using distance health and telemedicine for a lot of the encounters that we do. It's basically going to be a telemedicine clinic. So we're partnered with some of the LTACs in the region and we're going to offer this service over telemedicine. And we're going to do a screening for depression, we're going to do a screening for anxiety, PTSD, cognitive decline, and et cetera.

We're going to get a baseline while they're in the ICU before they get discharged, and we're going to do a 30 day follow up and then we're hoping to be able to continue this and do a six month and 12 month so we can get longitudinal data, but also so that we can start interventions early on. For example, medication reconciliation. Something as simple as that. We oftentimes see patients taking more medications as they should. But also starting antidepressants or antianxiety medications early on and not waiting for them to be able to come out to clinic three or six months later on. Perhaps they need more physical therapy or they need Botox. So making the right referrals to a specialist. And even managing antiplatelets, anticoagulation and some of the other things, other aspects of their medical care that sometimes can fall through the cracks.

So we're hoping that this will help provide better care for these patients, not only from a medical standpoint but also from this post-ICU syndrome standpoint.

Dr. Alex Rae-Grant:  It's interesting, in this day and age, we now recognize that the patient's one part of the access of care and certainly families and caregivers can be devastated by some of the critical illnesses that your group sees. So what we now know that families may express anxiety and depression and even a posttraumatic stress type of syndrome as a result of seeing their loved ones in a critical condition. And they may need help with that. So is your team doing anything to support that group through this process, what might be called post-ICU syndrome in family?

Dr. Joao Gomes:  About two years ago when one of our newest staff joined the group, he had an interest in looking at family experience in our unit. So we conducted a survey asking families, using a validated tool, about their experience in the ICU to try to learn a little bit more what their experience was and whether there were any things that we could optimize. And a number of changes were made after that survey. The results were available. Something as simple as the family room, the waiting room area. There were a few things that they pointed out that hadn't occurred to us, but it made a huge impact for them. So as a result of that, we have convinced the administration to modify their waiting room and add a few amenities that we think is going to make their experience a little bit better. So we are working on that.

The other big area was one of communication. As you can imagine, you have a loved one in an ICU, quite sick. There are multiple teams of doctors working and you don't necessarily know the minute-to-minute information, updates of what's going on. So we incorporated family rounds. So when we do our rounds in the morning, usually between the hours of 09:00 and 12:00, we tell the family and we encourage them to be physically present there and be part of the discussion that takes place between the nurse, and the nurse practitioner, residence or fellows and the staff so that they can witness the process, they can hear everything that's going on. Oftentimes, obviously the level might be a little high because we're using medical terminology, but we make sure that for every organ system that we address, we give the patient family a summary of what's going on and what the plan is and what we hope to achieve for the day.

So I think that interaction is very helpful. They seem to feel better, because at least they know what's going on. And I think that has improved the family satisfaction overall, at least in the area of communication with the team.

Dr. Alex Rae-Grant:  Joao, we talked a little bit before we got started and one thing you mentioned to me was the idea of ICU diaries. I hadn't heard of that before. Can you tell the audience a little bit more about that?

Dr. Joao Gomes:  Yeah, absolutely. It's a relatively new tool that has been developed and the idea is to have a formal diary notebook where the team that cares for the patient can write brief daily updates, relevant things to happen with and to the patient. Obviously there are a lot of concerns about HIPAA information, protected health information, et cetera, but it's really more so that when the patient eventually wakes up and is trying to make sense of what happened and may have significant gaps in their memory, they can go back and refer to this journal and look at the progression of their illness day by day.

Similarly, families are encouraged to leave notes in there, to leave comments. In some places, particularly in Europe, even pictures are posted there as you understand the regulatory environment in the US might make that a little bit more challenging. But we hear from patients over and over that they have this big gap in their memory, they're very confused about what happens. Particularly if they were delirious, they don't know... They have difficulty separating reality from some hallucinations they may have had during that episode. And having that journal actually has been shown in research to decrease some of that anxiety and to help with recovery and helps them make sense of the experience. We're hoping to be able to secure funding to be able to provide that tool to our patients. Unfortunately, we currently are not able to do so, but we're looking forward to doing that in the future.

Dr. Alex Rae-Grant:  So before we sign off, are there any additional takeaways or information that you have for providers like myself? We might end up caring for these patients in the outpatient setting after they're discharged and recovering from the ICU. Anything else that we should be thinking about or be aware of?

Dr. Joao Gomes:  Yeah, I think just thinking about the possibility that if a patient had any intensive care unit stay of any significant period of time, and by significant period of time, usually the literature quotes 48 hours or longer, that perhaps some of the manifestations, some of the symptoms that you might be encountering could be related to have a high index of suspicion. And hopefully as we have our clinic up and running, we certainly would be helpful to assess and see these patients in referral.

Dr. Alex Rae-Grant:  Well, I might be sending you patients. We'll see. Well, Joao, thank you so much for joining us and we really look forward to seeing the progress your group makes in helping how we care for patients and families in the ICU.

Dr. Joao Gomes:  Thank you. Thank you very much.

Dr. Alex Rae-Grant:  This concludes this episode of Neuro Pathways. You can find additional podcast episodes on our website, clevelandclinic.org/neuropodcast or subscribe to the podcasts on iTunes, Google Play, Spotify, SoundCloud, or wherever you get your podcasts. And don't forget, you can access real-time updates from experts in Cleveland Clinic's Neurological Institute on our Consult QD website. That's consultqd.clevelandclinic.org/neuro or follow us on Twitter @CleClinicMD. All one word. That's @C-L-E, Clinic, M-D on Twitter. Thank you for listening. Please join us again soon.