Pectus - Patient and Family Education

So we're unique in that we have an integrative care department. Uh, we are the only pediatric that has an inpatient integrative care team, so we, um, consist of about 15 holistic health specialists, and what we do is we provide. Provide a holistic influence throughout the hospital so we're helping to improve pain and comfort outcomes throughout the hospital so we are doing a little bit of research, um, we have, but overall we are enhancing the the patient and family satisfaction. So we provide education to not only the families we provide them to the patients as well as our staff so we offer a a variety of modalities, but the primary modalities that we utilize with patients who are having the pectus repair is massage therapy. So Massage therapy can reduce pain. It can reduce anxiety. There's a lot of research with the Tiffany Fields Research Institute as well as other areas, um, we're decreasing cortisol levels and overall enhancing the relaxation for these patients. Uh, typically I would myself use, we usually work on the neck, the shoulders, areas that are tight, but we can do anywhere, um, like the legs, the feet, just it's calming them, relaxing them. Um, reducing pain levels, so we also use energy therapies here. We have practitioners that do Reiki. We have practitioners, practitioners that practice healing touch. So, um, some of you might not be as familiar with energy therapies, and the way those work, um, they're bio field therapies that they are an energy based approach. They are working to restore harmony and balance within the body. So it's very calming, it's very soothing to the patients. It's a great way for us to work with patients that maybe we need to have hands off because it can be hands on or hands off therapy. We use it a lot in the PACU, um, people who are coming out of anesthesia, we, um, also use it at the bedside. It's nice when they first come up from the PACU. They're still sleeping, um, it's. And then we don't have to do any hands-on work. Uh, we start using massage therapy later on. So what we're finding is most inpatients do inpatient pediatric patients do experience pain or discomfort while they're here at the hospital. Um, this is general in most pediatric hospitals, so we obviously we're using our pharmacological methods and they're very effective. We have a fantastic pain team here, but we are also integrating our integrative care therapies, and those are actually. Um, we're seeing that families are requesting these services more and more so that it's kind of consumer driven as well. We did research here back in 2009. We did a retrospective database review and what we did is it wasn't specific to the um pectus population. But we looked at 519 patients, we introduced massage therapy. We introduced healing touch, and what we found was we were able to reduce pain and anxiety scores by 50% in 50% of our patients. So that was really substantial evidence that we're making a difference here. Uh, now what we're talking about in the future is, and this is, you know, we're just, this is just on the table, we just started discussing it. I would say that we're already incorporating some forms of mindfulness and meditation with our patients, um, helping them to be aware and to calm and to focus, but we're exploring the possibility of can we introduce this preoperatively because when you have patients that are already under a lot of stress they're already. Um, they're in high level of pain. It's very hard to teach them something new such as that, so it would be great if we could reach them in the pre-education session that they receive in the Pectus clinic. So I don't know if you're familiar with John Cabot-Zin. He's done some work with mindfulness-based stress reduction, and there's a lot of clinical research that you can see. Uh, that he's been doing, you can look at the University of Massachusetts Medical School. They have a center for mindfulness. You can look and see some of the research there. Um, so. Yes, we would like to incorporate this into our practice here at Cincinnati Children's, and we also would really love to focus our work on seeing how integrative care is helping the pectus population specifically as well as doing other research um as far as our effectiveness with massage therapy so that's that's where we're going. Um, and, um, Jamie, um, and what I'm gonna ask our, our, our sort of current and future presenters is that given the time constraints, uh, that we'd be mindful of the time then so that we can really, uh, give enough time to our special guest, uh, who is sitting in the corner here, so we'll be, uh, ready as Cole. Good, OK, go ahead, Jim. So with physical therapy, I think one of the things that kind of sets us apart from some of the other programs as we attend. The Pus education class prior to them having the surgery and we kind of set the role and expectation of what we expect when they come in. We meet with the families and the patients and kind of build that res rapport with them and we, you know, go over what they're going to expect here on the first day we're coming in. We're planning to get them out of bed and a lot of, um, studies have been done and shown that early mobility helps to reduce the rate of complications and decrease overall length of stay. So typically we evaluate the patients. Let's find that slide, um, the first day and we kind of go over, uh, home environment barriers that may they may have that we can kinda go over, um, whether they have stairs in the home if that's something we need to address before that they leave here, um, kind of school environment. And then we'll progress their activity from that first day. So the first day we're showing them how to get up with those precautions. Um, they're not allowed to like bend, twist, no rolling. So what we do is show them a way to kind of do a crunch to sit up, um, and doing a sit up and then swinging their legs over the bed so they're not using their arms to push or pull to stand up and then we progress from there while they're here. Occupational therapy also sees these patients while they're here. Um, they go over techniques for dressing and bathing within their precautions. Sometimes they give them equipment if needed, uh, long handled sponges, reachers to maintain that. We kind of go over education for school recommendations. A lot of times we suggest having a second set of. Um, textbooks at home if they need that so they're not commuting them back and forth, um, we like to know whether they're going to be, um, in a chair or in bed, a recliner sometimes with that pressure that they have when they go home on their chest, they feel more comfortable getting up from a recliner. So sometimes we like to make sure that we can know this in advance and we can go over that while they're here. For their stay. And then we'll continue to strive to make the best optimal care for our patients and families. Currently Mary Mastery, she's a PT, um, in Illinois, and she's doing some research currently with this population, and we're working on to increase maybe joint mobility, their muscle strength and balance, um, pre and post surgery, and then working on motor planning, so they're using less of their. Neck muscles and more of their abdominals to help with that and our goal is to just help optimize the outcome from the surgery by reducing their pain by meeting the families prior going over our expectations and continuing to build off of those skills, um, to improve their function before they leave here. Great. I think um for the sake of time we should probably just go on to the last session. Which is cool. OK. Well. Well, we are very, very fortunate here at Children's to have, uh, outstanding, uh, nurse practitioners who really, uh, Really run the, the service, uh, postoperatively and preoperatively and prepare our patients, uh, for, you know, this experience, um, and so we have, uh, Emily McKenna here as well as Christina Bates, and they're gonna talk about how we prepare patients for, uh, their pectus surgery and, uh, how we take care of them, uh, postoperatively and how we also follow them post-operatively as well. Well, about 3 years ago we actually created a preoperative uh PC class that we felt was really important for educating patients and families before the procedure. We wanted to make sure that we decrease anxiety before the procedure, make sure that um nobody felt overwhelmed. With everything, so we've been teaching a pre-op practice extra education class and it's multidisciplinary. We have pain service there. We have prior patients that have had the procedure. Physical therapy joins us as well. And so Emily, do you want to tell us a little bit about what we do with the class? just a brief overview. So all of our uh families, patients and families are required to attend the class before their scheduled surgery. Um, and at the class, we go over, um, the expectations, um, preoperatively in regards to what testing is required, what their stay is gonna be like, um, after surgery, and then also what to expect in. The recovery room, um, on the floor, and even sometimes during surgery with placement of the epidural, um, and what devices they're gonna end up with postoperatively, whether it's, um, compression boots, a Foley catheter, um, we talk about using incentive spirometer. We go over all of the things to help prevent postoperative complications with the family just so that they have a better understanding of, um. What's going to happen to them while they're here? We go over restrictions and what to expect once you're home as well, um, because it's not just a procedure that you have done and then, um, it's also the postoperative course, uh, the three months of restrictions. So, so we make sure that everybody is comfortable with everything. And at that course, uh, it's, it's true that there's many times a surgeon, a patient, a patient's family. Um, the anesthesiologist pain service is there. I mean, really the whole cadre of our team is there to prepare them and so, and it's, we found it been very helpful and that's why we've made it mandatory. Just patients are more comfortable with the procedure. They know what to expect. The families are involved, um, they're there again with the, um, patients that have already had the procedure, so they know what questions to ask and it's been very beneficial. And uh out out of that we've also uh like come up with a, you know, our SSI bundle and how we prepare patients uh for surgery in order to prevent infection because obviously infection and pectus can be really severe. It can require prolonged antibiotics. It can require trips to the operating room and if we can prevent that. You know that's that's a bonus. So can you tell us how we can, uh, so we created our um SSI bundle for our practice population. We actually did, uh, conducted a literature review as well as collaborated with infectious disease here and um we've been tweaking and modifying our SSI bundle, but it's been in place for almost 3 years and so part of that we screen all patients for, um, obviously allergy metal. With our patch allergy testing that we do, and then we also do ORSA and staph screening and treat them appropriately with the Bactroband if they're positive and so all patients are screened. Emily and I, we talk with each patient preoperatively, making sure that they're all comfortable, that all screening has been conducted, and that appropriate intraoperative antibiotics are ordered as well as postoperative course antibiotics. Yeah. Do you have any questions or? Um, no, not right now. So, as far as like postoperative pain and things like that, I mean, we've all had our patients that, uh, you know, we've done pectus repairs on that maybe we found out later that they had like Ehlers-Danlos or something like that and they're having chronic pain issues. Are there things that we can do for those patients, uh, Derek, our geneticist to try to, uh, sort of preemptively, kind of, uh, you know, take care of that pain and, or prepare them or. Yeah, so, Uh, I promised to talk about, um, uh, pain management in patients with Ehlers-Danlos, and I'd mentioned that there are multiple different problems that come along with this condition, and you think about, OK, so they have chronic pain, chronic headaches, uh, irritable bowel syndrome, panic and anxiety disorders, sleep dysfunction, and you just have to wonder where does all this stuff come from, and that question actually cannot be directly answered at present, but we have a couple of different working models for this. I think about this condition divided into three parts. There's a musculoskeletal problem. There's an autonomic dysfunction and there is a GI dysfunction. I'm really gonna just talk briefly about skeletal and um autonomic dysfunction. What we typically see is with the skeletal system that's the easiest one to understand is that many of the joints are loose and wobbly, and so what the patients are often doing is spending a lot of time trying to control their joints as they're just doing daily activities like walking, so their knee will be moving. Back and forth too much and it puts more tension in those muscles. Most of the pain in our patients is actual muscle based or muscle attachments as opposed to arthritis or bone pain that we typically think about. So what we do with that is we work with physical therapists to get better control. Often this is by loosening the muscles that become too tight from the constant tension and then strengthening those counterbalancing muscles, uh, which often become weak. So we try and provide more stability in that way. We also know that there is a feedback problem. from the muscles, which gives an impairment to proprioception, and this has been demonstrated in multiple studies and meta-analysis is that our patients actually have more movement than they actually should and where we believe this is coming from is the connective tissue structures that mediate the feedback of how much tension and stretch is in every muscle group. So there are some physiologic correlates to why all these things happen. Turning to the autonomic system, what we see is that 70% of our patients as adults have this blacking out sensation or dizziness with standing, and it's associated with racing heartbeat. So we think about this as this orthostatic hypotension or a postural ortho orthostatic tachycardia syndrome. And we know that this happens, but the real question becomes why. And many of what we're doing with our patients is trying to treat that dizziness, but it's not doing enough because when our cardiologists are seeing these patients, they're trying to improve the blood volume, calm down the racing heartbeat, and try to make it so that patients aren't fainting as much. What we're missing the boat on is that this is actually tied into the autonomic nervous system. And our patients who have this POTSs phenotype or this dizziness with standing have overactivity of the sympathetic nervous system. When the sympathetic nervous system is overactive, what we see is that our patients are more panicky and anxious. It has a tendency to create a vigilant state so that our patients have difficulty falling asleep, and that, uh, state of vigilance often causes them to wake up very easily in the middle of the night, so they have terrible sleep, and we often see a phenotype of chronic fatigue. This irritable bowel syndrome seems to come about to some degree because as the autonomic sympathetic activation happens, it actually shuts down those parasympathetic functions of digestion, so we have many of our patients will eat and then immediately, immediately feel nauseated or have abdominal pain. What we are working on with this particular paradigm is the idea that similar to the musculoskeletal feedback system where the sense of tension in the muscle is impaired. Our working model is that the sense of tension in the cardiovascular system is also similarly impaired, meaning that this is the feedback that gives you your brain information about blood pressure. When this system is out of balance, it's tied into the regulation of catecholamines, and we think this may actually shift that balance so that there is more activity and more sensitivity toward that sympathetic side in trying to rebalance this, we are actually trying to work on. Uh, re engaging the cardiovascular system because many of our patients due to their, uh, leg pain and chronic fatigue and all these other problems actually become deconditioned. They cannot walk as far. Um, they have poor cardiac output and so when we get them into exercise programs that work with their system, then we actually find that many of these systems begin to improve. So our approach to our patients has actually been. Somewhat opposite of what you would think you would want to do with these patients, which is to tell them to slow down, don't do so much because you're going to hurt yourself. What we've actually found is we actually need to get them more engaged and more active, and we are following a protocol that was developed in Dallas where to treat patients who have dysautonomia they developed an exercise program of 5 days a week, 30 minutes per day of reaching 80% of your maximum heart rate. How they do the exercises is very important because most of our patients with that dizziness with standing, if you put them on the treadmill, instantly become dizzy. Their heart rate's up at 220, and they feel nauseated and they say that exercise is the worst thing possible and they never want to do it again. What you have to do with these patients is recognize that when they're standing up, all the blood is going to their feet and that their brain is sending out stress responses the entire time they exercise. When we get our patients sitting down. So this is recumbent exercise bike or rowing machine, or when we put them in the pool, this same process doesn't work in the same way. And in fact, in the pool, it actually seems to support blood pressure flow or blood flow to the brain, so our patients actually do much better when they're in aquatic-based therapies. So as we've begun to realize that this problem is going on, we've actually seen changes in chronic fatigue, in sleep dysfunction. And that sense of um a pain sensitivity, all of those functions are tied into that catecholamine processing system. So in a very quick nutshell, that's what we're uh working on addressing uh through our connective tissue clinic.