Hi, I'm Annie Johnson, nurse practitioner at Mayo Clinic, clinically working in our multidisciplinary adult medical-surgical ICU. And my colleague, Emily Schmidt, is here with me as well. I am the program director of the Mayo Clinic ICU Recovery Program that we have. Emily is our lead therapist in our clinic. And Shannon Pichet is our other colleague that works directly with us in the clinic at this time. And she is our lead clinical pharmacist for the clinic. A little bit about our clinic. We started our clinic in 2019. So pre-pandemic. It started in September of 2019, so just pre-pandemic. We were seeing all of our patients face-to-face, physically in clinic at that time. And then for obvious reasons, transitioned fully to virtual delivery of our clinic in about April. of 2020. Since that time, we have stayed fully virtual, seeing our patients either via teleconference, telephone conversation, or videoconference, completely dependent upon patients' choice for that. We have clinic four times a month. So every other Thursday and Friday, we hold clinic. We have seen close to 650 patients in our clinic up to this point. And our entire team is present for the entirety of every appointment. So it's kind of a unique way to hold appointments where we, all three of us, are present for the entire hour that we spend with our patients during our appointments. So I think for everybody in this room, we understand that critical illness has lasting impacts on quality of life, and specifically on health-related quality of life. And as part of our appointment for every patient, we assess health-related quality of life. And we also assess patient-identified goals for improvement in that quality of life. So the purpose of this study was really to better understand our patients' ratings of their own health-related quality of life, and then also to further characterize what they identify as being goals for themselves to continue to improve that quality of life. So we started using, back when we were seeing our patients face-to-face in person, we were using the EQ5D-5L, so the full EQ5D measurement tool to assess our patients' health-related quality of life, along with a visual analog scale. So if you're familiar with a visual analog scale on the piece of paper, it's that 0 to 100 scale that you see in the middle of the screen here, along with a little box on the side that says, draw a line from this box to whatever number you would give yourself as far as your health-related quality of life goes. And that worked really, really well when we were seeing our patients face-to-face, and we were getting really fantastic information back. However, when we had to suddenly switch to our virtual clinic, we didn't at that time have this tool available to us in electronic form that we could push out to our patients via their portal. Also, not all of our patients are on the patient portal, and even if they are, not everybody is technologically able to really complete scales that way. So we really had to quickly rethink how can we still use this tool with our patients, because the information that we were getting from them at that time was so valuable. It was really helping us understand how to really complete those individualized recovery plans for our patients. So we had to get a little bit creative. Well, actually it didn't take much creativity. All we really did was start asking them the questions. So instead of converting it to an online format or anything, we just started asking the question. So what we do now with all of our patients, at the conclusion of my piece of the appointment, so I start every appointment at the very end of my piece, so the last question I ask is I just ask the patients how they would rate their current health state. So we do the 0 to 100 scale, and I say to them, you can see the script right here on the screen, I just say, you know, on a scale that goes from 0 to 100, how would you rate your quality of life? How would you rate your health today? And so I tell them 0 means your health is as bad as it could possibly be. 100 means your health is as good as it could possibly. How would you rate your health today on that scale? And then they give us their answer, and I then quickly follow up with a follow-up question to that being, okay, if you could think of some top priority things, even just one thing that you can think of that would help bump you up that scale, even if it's just by a couple of points, what would that be? And then they answer that question for us, and that has been such a powerful tool for us in our clinic, so we can get a good sense of how people are experiencing their health at the time of follow-up, and what they want to see get better. Some people, if it just varies, we'll talk about that here in a couple of slides, but then we can kind of grab a hold of what they are telling us with these responses and further build in Emily and Shannon's piece of the appointment from there and really individualize their recovery plan. So here you'll see results. We were able to analyze data from 201 patients that were seen virtually between April 2020 and January 2021. 176 patients were able to give a score on that scale with a few declining to answer the question or having difficulty with the question. The median score was 75, 75%, and the mean was 70 with a range from 20 to 100 as the scores reported. Health-related quality of life was rated lower than 50 in 19% of our patients. It was rated between 51 and 75 in 43% of the patients and rated 75 and above in 38%. Notably, there were six patients who gave themselves a perfect 100 score. Probably more interestingly was the information on what it would take to improve their health-related quality of life, and patients were allowed to list more than one area that they wanted to improve. The most common response with 38% of patients reporting improving their strength was their number one area. The other topic we'll kind of elaborate on in the next slide, a lot of patients reported that they simply needed more time to get back to their normal self. Many patients wanted to improve their shortness of breath, chronic health conditions, and then a good portion of patients wanted to get back to their hobbies or productive occupations. So that other category we were able to analyze was So that other category we were able to analyze a little bit further. The themes included improving stamina, fatigue, energy, sleep in about 15% of those reports, and then symptoms such as pain and nausea in about 7%. Other things included mental health and lifestyle choices like weight loss, etc. So like any study, there are limitations to this design. Most notably was the method used to deliver the EQ-5D visual analog scale as it was not presented in a visual manner, and that has not yet been validated. People also may report their health differently when verbally answering the question rather than looking at a piece of paper on the screen. Rather than looking at a piece of paper on their own. But not surprisingly, this work has generated many further research questions. One of the more notable observations that we made was that it is really hard to predict from our perspective what someone might give their health-related quality of life. Many patients that we thought were doing very well gave themselves poorer scores, and patients that we thought had numerous obstacles in their way gave themselves very good scores. So it's a perspective makes an incredible impact on health-related quality of life. So this makes us understand even more fully the importance of individualizing the treatment plans and recovery plans for our patients. And we want to know more about what factors really help to improve that health-related quality of life for patients, and what is going to really move the needle. It also makes us curious about resilience and how that plays a role in health-related quality of life. And then how can we tailor our program interventions to be more meaningful for this outcome? So in summary, health-related quality of life is significantly important to patients recovering from critical illness, and it should be a primary focus for recovery programs. Understanding the patient's health-related quality of life and desired focus areas really helps and allows us to tailor our multidisciplinary treatment or recovery plan and to meet the important needs of our post-ICU patients in the long term. No matter which way you may use the EQ-5D or a visual analog scale, it can still give meaningful information and can be very easily administered and utilized to gather some very important recovery information. Thank you.

EQ5D-5L tool

health-related quality of life

ICU Recovery Program

virtual appointments

patient ratings