Welcome, everyone, to our on-demand presentation titled Enhancing Recovery After Heart Transplant, A Patient Participation Approach to Co-Designing a New Prehabilitation Program. My name is Dr. Themis Yaslas, psychologist and health sciences associate clinical professor in cardiovascular medicine at UC Davis School of Medicine, and together with my colleague and partner, Dr. Javier Lopez, we're going to tell you about our co-design program and what we've learned. I want to acknowledge all of the patients and caregivers who participated in this program and who have lended us their voice. Also wish to acknowledge our co-design team, including Cindy Matsumoto, Sharon Myers, and Imo Ibang, all at UC Davis. I am Javier Lopez, the medical director of cardiac rehabilitation at UC Davis, and one of the co-presenters of the webinar today. It is a privilege to work with Dr. Yaslas and the co-design team on building this project. We have no conflict of interest relevant to this presentation. This project was funded by the ACC Accreditation Services Foundation Committee during the 2020-2021 funding cycle. The learning objectives for this presentation are listed in this slide. We will start the presentation by reviewing the potential benefits of prehabilitation for heart transplant patients. First, let's begin by reviewing the outcomes of patients who are in the wait list waiting for a heart transplant in comparison to patients after one year of transplant. In the graph on the left, it shows data from 15,000 patients who received a heart transplant between 2015 and 2020. There are two curves in this survival curve because the guidelines for listing patients changed during this time. So we have data of the mortality at the time of the wait list before in the blue and after in the yellow for the survival. If you look in the panel on the right, the mortality in the wait list changed from 13% to 11% with the change of the guidelines. The wait times during the period went down from 134 days to 55 days. Now the mortality during the year after transplant increased from 7.9% to 12.5%. And the length of stay in the hospital for both periods were the same at 21 days. In summary, the mortality that we are trying to improve with prehabilitation programs is a mortality rate in the wait list of 11.7%. We have a period of 55 days in which we can work with patients in such a program. And we're ultimately trying to also reduce the mortality of 12.5% within the first year. Prehabilitation is defined as activities done by someone before they have a medical operation in order to improve their physical strength and help them to recover more quickly after the operation. The American College of Surgeons defines it as a process of improving the functional capabilities of a patient prior to surgical procedure. Recent guidelines from the Enhanced Recovery After Surgery Society have highlighted the importance of cardiac surgery patients to undergo prehabilitation. In these guidelines published in 2019, we will review their current recommendations. Under these guidelines, prehabilitation received a class 2A recommendation for prehab to occur prior to cardiac surgery. The rationale for such a recommendation is because it is believed that prehabilitation enables patients to withstand the stress of surgery by augmenting functional capacity, improve physical and psychological readiness for surgery, as well as reduce the post-operative complications and length of stay. You're also expected to improve the transition from the hospital to the community. I will add that there are no known guidelines yet for patients receiving a heart transplantation. I will briefly review the trajectory of a patient through the period of time from the preoperative time to the post-operative time when people are recovering and need to rehabilitate. In this diagram noted by the purple line, the patient preoperatively start at a level of functional capacity that is considered independent. During the time of surgery, because of the stress of surgery, patients lose their independence and are in need of physical help. Most of the time, these patients will recover over time to a level similar to their before status. A patient with comorbidities or complications may not reach the same level of recovery post-surgery. However, as shown in the blue line, when a patient receives prehabilitation, the functional capacity is expected to increase prior to surgery. So when they go through the surgical procedure and have the same amount of stress, which reduces their independence, they ultimately land at a higher level of functionality, which is presumed to lead to a better recovery post-surgery. The orange line represents a patient who has received prehabilitation, but also suffers of comorbidities and or complications. And as shown in the graph, these patients end up at a higher level of independence than the green line, which is a patient with complications and comorbidities without undergoing prehabilitation. Hence, is there any data published in the literature today to show that prehabilitation for heart transplant patient is of value? As seen in this publication from 2022, presented in an abstract form at the ISHALT meeting, prehabilitation demonstrated in a cohort of 91 patients that there was a benefit for a shorter mechanical ventilation times, shorter ICU stay, and a reduced length of stay in the hospital. In addition, all but one patient were discharged home, whereas 31% of the control patients require non-home discharges. This demonstrated to be safe and effective for improving the preoperative readiness of patients for transplantation. Now, if you're a physician like me in the rehabilitation field, you would be wondering, how do I start a prehabilitation program in my institution? Or what do I include in this program? Now, we've looked in the literature and there are no models to guide us into answering these questions as of today. We propose that to build such a program, we first have to define who would benefit, why would we do in the program, when and where we would do the program, and what we would offer in the program. Who would benefit from the program is the patient waitlisted for transplant. Most of these patients have had recent hospitalizations and are in and out of the hospital, which makes them at risk as well as ineligible for routine cardiac rehabilitation based on CMS guidelines. The reasons of why to do such a program goes back to the data from this one publication, where we would focus on patient-centered readiness, improvement of functional capacity, and the reduction of mechanical ventilation and ICU times, as well as the length of stay in the hospital. You would aim to mostly get patients discharged home rather than to non-home locations. Now, we do not know yet what the impact would be in the one-year survival of these patients. Now, to answer the when and where, we need to recognize that the average time in the waitlist for patients today in the United States is 55 days, and that most of these patients will be in and out of the hospital with exacerbations of their heart failure. So a program will have to offer services in and out of the hospital. Finally, the question is, what would we offer in such a program? And that is the subject of the presentation today. We determined that to identify the components of the program, we would take a co-design approach to building such components. So our next objective is to briefly understand how the process of co-designing works. Co-designing works by working side-by-side, and it does not use a top-down or a bottom-up strategy. Co-designing brings the service users and the service providers together to improve on an outcome that's been agreed upon. If you use the word co-design to understand the process, first it starts as a collaborative, collective, and consultative process in which people come together intentionally to create solutions, innovations, and improvements that can hopefully address the problems and improve the outcomes. Some of the elements that are needed for success when co-designing include, first, it should be a person-centered process. Second, it should start with a desired end or outcome. Next, it should be looking for practical and real-world solutions. In this process, we need to make ideas, experiences, and possibilities visible and tangible so it offers transparency. It also should be inclusive and draw on many perspectives, peoples, experts, discipline, and sectors so we can build an improved process over what one individual could develop. Now I would like to share with you some of the specific experiences that we had in our co-design project, and we'll address the third learning objective, describing the barriers to performing a co-design session for patients on a heart transplant waiting list. Speaking about barriers is a good place to start with regard to describing our co-design project because as a result of the COVID-19 pandemic, we faced a very serious challenge to begin with. In this image, you see what a co-design session looked like before the pandemic. You have a large conference room, whiteboards, sticky notes, lots of chairs, and stakeholders would come together and potentially spend hours talking through the specifics, different ideas and perspectives. But as soon as the pandemic hit, we could no longer gather in the same way, and so our team was forced to adapt and respond. And as a result, developed a particular approach to co-design at a distance. In order to properly capture the provider's voice, the experts, those clinicians who brought their expertise to the process of designing a rehabilitation program, we approached this three different ways. The first way is to capture what providers say. And what we did was have multiple asynchronous Zoom meetings where we provided guidelines to stimulate discussion among providers. And we had multiple groups meeting at different times in order to reach all of the stakeholders. The second way we captured the providers' voices is through what they wrote in the focus groups that we had. The providers used sticky notes in a Jamboard to write what was important and what they thought should be part of an effective rehabilitation program. The third way we captured the providers' voices is through surveys. We compiled the information gained from the sticky notes on the Jamboard and sent out a survey to synchronize their voice. The patient and caregiver's voice was captured through focus groups and individual interviews, which were then transcribed, leading to a transcript analysis of the audio. Patients were either currently on a heart transplant waiting list or had recently been transplanted in the last six months. In total, 10 patients were included, three that were post-transplant, seven which were pre-transplant. Four of those patients were inpatients at the time, and three were outpatients. And we also included three caregivers. We faced a number of barriers in our attempt to co-design with patients on a heart transplant waiting list. These ranged from patients feeling too ill or overwhelmed, those not wanting to share in a group setting, challenges in finding patients and needing to seek them out at other facilities, the need for permission to talk with patients was obvious, and it was helpful to develop relationships with other facilities and healthcare providers. Trust matters. Having a trusted healthcare provider make an introduction really is very, very important. In interviewing patients at other facilities, of course, distance is an issue. Not everyone is comfortable with the technology or using the internet to be able to do video conferencing to complete these interviews. Now I'll share with you all the various components that patients, caregivers, and providers thought were essential to include in a prehabilitation program for heart transplant patients. Let's begin with the patients. The key question we asked them to answer is what should be included in a prehab program for patients on a heart transplant waiting list. We asked the patients to use four criteria to guide their answers. First, to be creative. Second, to think outside the box. Third, to consider the experience of patients who are both inpatient and outpatient, and to use their magic wand as number four, meaning that no barrier, no constraint should limit their process. They really think as big as they wish. All 10 patients described education as being very, very important in a prehab program. Topics included nutrition, diet, exercise, and medication. On solicited, eight out of ten mentioned they wanted education on what to expect through the process. Here's an excerpt from a recording that includes an actual patient's voice on the topic of education. Asking about what types of things would be valuable for you to have been included in a prehabilitation program that would have been the most helpful for you. Education, education, being, you know, not being treated like we couldn't understand what was going on with our bodies. I was very appreciative of the fact that they educated you, but they didn't talk down to you. They wanted your feedback on, you know, everything that was going on in the process. And, and so you were part of the process. You weren't just taking orders. You weren't just taking pills. You know, you were, you were obviously the integral part of your prehab program. And like I said, the way that the doctors up there included and it educated me, I think made a big difference. Here's a patient speaking on the topic of education on medication. Well, it's gonna sound stupid, but really knowing what they mean and what they're used for. I have 11, 12 medications I take through the day. I didn't even know what happened on the floor. So I had to Google it and then I put it onto a spreadsheet so I can understand it. But, you know, even you have to like know the alternate names. So Coumadin can be Warfarin or something else. So knowing what the different names are too, because if you're talking to a pharmacist or you're working with a pharmacist, you don't know what you're saying. You know, I need this and they may have, well, I have this. I go, is that the same thing? So really understanding what the medications are, the different terminology for the different types of medicines. Exercise was another component of prehab that was described as really important by all 10 patients. They wanted physical therapy or exercise or trainer resources and guidelines available to them. They were aware of that leg and overall body weakness was an issue, fatigue and muscle loss as well. And realizing that exercise was important to help them with their motivation and attitude. And they described a variety of different exercise modalities that they thought could help. Here's another actual patient speaking on the importance of exercise. I think that we should walk on treadmills to build you up. We walk around the hospital, I think a treadmill will help us. And the little walks that we're doing, I think the treadmill will help us to get our motivation going and get us stronger. That'll help you get towards your efforts to getting better. And I think that we should have drawings, you know, go to a room where we can draw and paint to help motivation. That's something that you move in your arms and doing. So if you're not moving your arms and stuff, now you will do it to paint. You got to go up and down right over here, do this, do that. And I think that would help. Yeah. Let's hear from another actual patient speaking on physical therapy. Thinking about a program that's like that, that would help you both physically and emotionally to help you get ready for the heart transplant. What things do you think would be most helpful to you to include in a program like this? Definitely physical therapy. Have you gotten any physical therapy since you've been on the balloon pump? I have been doing physical therapy exercises in my bed. All 10 patients reported that the psychosocial and mental health domain was also very important. All identified having some sort of difficulty with mood at times. Eight out of 10 identified having psychosocial help as a needed component for the prehab program. Specific issues included anxiety, fearfulness and worry, the need to help develop a positive, effective mindset or attitude, periods of sadness, crying, depression, and the simple fact that waiting is hard. Here is an excerpt from an interview with a patient who had been visited by a psychiatrist in the hospital. All right, I'll get good for you. I asked for help. That's wonderful. And they come once a week, you said? Yes. Or if you need it for twice a week, they come. It's according to your needs. All right. And they talk about whatever it is that you feel is important to talk about. Yeah, they don't tell you what to talk about. They come, they're here to help you. So you get to get off your chest what you're going through. They are here for us. That's wonderful. And has that been helpful? Yes, it is very helpful for me. And because I get to express what I'm going through and all the things that are on my mind, because some of the things that are on my mind is the reason why I can't go to sleep. Yeah. Here's an excerpt from a patient speaking about their experience with depression. Are there any other things that have gotten in the way that you can think of? Um, you know, at one point, I was, I think I was kind of going through a depression. And I didn't want to take no medicines. I didn't want to do that. I was like, ready. I was laying in bed and laying in bed for 21 days. And I kept telling myself, this is it. No, I pray. My mom passed away. And I've talked to her, you know, and things like that. And I just kind of told myself, this is it. Yeah. If he takes me now, you know, I'm ready. But you know, eventually my brothers and my sister came in and told me my daughter, you know, look, but you got to get out of that bed. And I hadn't showered or nothing for the duration of that time I was in bed. All 10 patients identified diet and nutrition as another critical component for a prehab program. They wanted information on things like improving, using food to improve strength and prevent muscle loss, that hands-on nutrition information, not just on handouts, personalized diet information for their specific needs, and also cooking demos and recipes that they can use. Now let's hear from another actual patient describing the importance of nutrition and dietary assistance. Yeah, I agree on the diet part. I think sometimes I think like the pre, sometimes you would go in there and you know, all the doctors, you'd have those meetings and they come in and they kind of tell you what to do and what to expect and things like that. And I think sometimes just dealing with the dietitian, it was a lot of times it was just you were just given paperwork, you know, to kind of, you know, here, here's what you need to eat. And, you know, here's, you know, some, you know, portion sizes and some guidelines. And, you know, and that was really about it, you know, but, you know, like, like he said, it's like having, to me, it would have been more beneficial as, you know, maybe having the cooking class or, you know, and I think what I, what I, what I always thought was, you know, even just, you know, having, having the patient bring a, a list of what they eat on a daily basis, you know, and, and, and say, look for, you know, a week out, your appointments on the 20th, you know, and on the 10th, say, look, just start writing down everything you're eating. So you have a food list of what they're eating and get more of an idea of the things that you can just say, you know, we need to cancel this and find things that'll, you know, we can replace it with this, or we just got to get rid of this. And, you know, we just, you know, figure out a little something that can help them. During this process, we found some spontaneously and frequently identified themes. The first being what to expect, knowing what was to come, the kinds of appointments, what would be expected of them, what it would be like. Eight out of 10 patients reported this. And also, there was mention about the potential benefit of peer mentoring, talking with others who had already gone through a heart transplant process and could advise them from their own experience. Half of the patients spontaneously reported this. Let's hear now from another patient on the topic of what to expect and the value of peer mentorship. So you're saying besides just, you know, healthcare staff, talking, having people around you that were patients that have gone through and already gotten their transplant, having being around them and being able to talk to them would be helpful. Oh, yeah. Tremendously, I feel, you know, because they can kind of let you know what to expect. You know, how you look at them and see how they're doing, how long they've had the transplant, you know, and things like that. I think all those types of things are encouraging to you, you know what I'm saying? He's doing it, you know, he's gone through it. There's no reason why I can't do it after I've gone through it, you know. Our final patient clip includes an important final message. Everyone's different. I think that the key for you guys or for the caregivers is to identify the individual needs of that person, the differences of that person, and tailor programs to meet that rather than to have a program and go, here's our program, you could fit into it wherever you fit into it. To review the findings of our project, I refer you to the left side of the slide where we capture the patient's and the caregiver's voice in themes. On the bottom part in purple is the provider's voice, which was captured in three different ways, the focus groups and interviews, the utilization of the Jam Board and sticky notes, and surveys that were done after the first two activities. You can see in the boxes under label as findings, the themes that came through each one of these processes. So to compare the correlation of the different findings across patients, caregivers, and providers, we have done a heat map that shows the concordance and or discordance of the findings among the different groups. Once we have completed capturing the voices of the patients, caregivers, and providers independently, we presented the voice of the patients to the providers and have them develop the program components based on this voice. The major findings of our quality improvement project are summarized in this slide, and the results of what components to include in a program from the co-designing process will be published in an upcoming manuscript. Thank you for your attention.

Enhancing Recovery After Heart Transplant

Prehabilitation Program

Heart Transplant Patients

Mortality Rates

Transplant Waitlist

Co-Designing Process

Program Components