2024-03-20 09 Panel 6 Quality of Life Concerns in Aerodigestive

>> All right. I would say shifting gears but that was a perfect lead-in Dr. Rutter, so thank you. So we are going to talk a little bit about quality of life and what that means and that means something different to all of us and our patients and our families. On our panel today, well did I just shut us off? There we go. We have Dr. Matthew Smith that is part of the Cincinnati Children’s Hospital and a pulmonologist. We have Dr. Mohamed Fazili and he is part of the bronchoscopy program at Vanderbilt University. We have Rodrigo Torres-Castro and he is a respiratory therapist at the hospital clinic, he’s at the University in Chile and myself, Kimberly Morris, and I’m at Rady Children’s Hospital San Diego. So who are the patients that we’re talking about? Pretty much everybody. So at every patient, at every age, and at every stage of their care and when we think about quality of life that means, like I said before, it means something different to all of us. We’re really good at being passionate about what we do in our respective fields and as aero-digestive teams we’ve become really good at working with each other, letting each other go first in the best medical interest of our patients. But what happens when we try to convince some of the families and our patients that, hey, we think you can go, we can get your patient, your child to get to all the way over here and this is what your goals could be. These are all the aspirations that you could have, this is all the progress that we can make. But what happens if that doesn’t align with what the families want and what might be within their bandwidth or what is best for them and their family at home financially, socially, and just what their dreams were to begin with. And at the same time we’re also challenged when our families come to us with all of their hopes and dreams and the patients and sometimes we have to help them align their goals with them so they’re more realistic. And so I’d like to just ask our panel to start before we bring the different speakers up, just in your respective fields what comes to mind as far as quality of life goes. I think with an ENT the first thing that comes to mind when we’re talking about kids with trachs and quality of life is getting them to integrate into society and making sure that they are able to thrive in doing those goals that that parents and they have for themselves. From the pulmonary perspective mobility and daily activity. I think that is important and there’s daily function. In my case that I work in a natural program of ventilated patients I think that it’s important the rehabilitation, the society and the family and this interaction is better than for example a quality of life questioner that is only a paper. Thank you and from a dysphagia speech pathology perspective I think more from a feeding and quality of life of engagement of the family and their child from infancy through as they’re going through adolescence and how we challenge ourselves to live in the uncomfortable zones of what’s best for them and what can we do to be more comfortable with what is most optimal in their health. Okay you want to come on up? So again I’m Matt Smith one of the ENTs at Cincinnati Children’s. As far as disclosures I do have a PCORI award which looks at some of the stuff that we’re gonna be talking about today as far as improving outcomes for kids with trachs at home. So there was a paper that came out back in 2015 looking at life after tracheostomy and looking at patient family perspectives looking at teaching as well as what was the family’s response to going home with a with a child with a trach. This was a retrospective study and out of the 220 respondents they had looked at caregivers for both adult and children but 90% of them cared for for children. The the thing that came out to me with this study is 64% of parents had an undergraduate degree. I don’t know about you but at least my patient population does not have 64% of them having an undergraduate degree. So I think that when it comes to this is twofold when it comes to looking at your population know your families and know their experiences and learn from them. The other thing is even in those patients who you would consider to be highly educated or those families that would be considered highly educated about six about 50 to 60 percent of them didn’t really feel fully prepared going home. How are we to expect families who don’t have the proper resources or education to go home in that situation and so they they subsequently talked about where home nursing needs met. When was the first trach related visit to the emergency department or urgent care and and as you see and you can look up this paper later one of the things that it that it really revolved around was those resources when they first get home whether it be from home nursing whether it be to are they providing some of that care how did that impact the care of that child with a trach and so what we’re going to talk about today is quality of life. The first thing is what determines quality of life we’ll talk about some tools in a little bit but that’s the first thing is what determines quality of life. Whose perspective is it is it from the patient is it the caregiver most of the time in our kids that we’re talking about it’s actually the caregivers who are filling out those quality of life assessments for those patients. I would also put on there whose perspective include yourself as the clinician we published a paper about a year ago looking at moral distress amongst providers who provide care to kids with trachs and vents and there was a high amount of moral distress amongst those providers because you are faced with not only making and talking about difficult decisions with those families but also sometimes and it even came up at lunch today when we had a discussion possibly making decisions that you don’t feel comfortable with as a physician because you might disagree with what that quality of life looks like for that child. So again and then how do we measure it and so there are two tools that we’ll talk about in a minute but what are those variables that go into impacting quality of life. There’s the family we are already mentioned prior education what support system do they have what are their communication skills what does the home environment look like at the patient level how often is trait care having to be made do they have underlying diseases that make trait care that much more difficult what does it look like from the patient standpoint and how are their daily activities changed and we’ll talk about that with a case presentation a little bit later from a health care system standpoint how does it look getting them out of the hospital we have patients in our hospital all the time that unfortunately sit in our hospital our long-term care ward because they aren’t safe to go home they don’t have the proper resources at home to be able to get home one of those things being home nursing there’s a huge home nursing shortage in the United States and I know that in other areas there’s a huge barrier that’s there when it comes to home nursing how are they going to get back and forth for multiple visits when it comes to DME suppliers are they going to even have what they need to take care of their child in stock especially as we saw during the pandemic those shortages come up from a community standpoint can emergency services get access to those patients we started a program about eight years ago called the heroes program where we actually have our local EMS providers go out into the community and meet those patients and do a home survey in order to make sure that they are safe and have those resources set up and then travel restrictions how how you might say why would travel restrictions impact quality of life think about that patient who just wants to go visit a family member and they can’t because they can’t actually make that trip in order to go visit them the the main tool that is used to look at quality of life is the Peds quality of life or the Peds QL developed by Dr. James Varney in order to get access to the tool all you have to do is contact them if you go to their website contact them they will give you the tools for it it’s a very nice tool and I’ll go through the the domains on the next slide but it not only does it have generalizable quality of life it also has disease specific validated quality of life tools another from dr. Chris Hartnick which is more specific is looking at the pediatric trach health status instrument so with the Peds QL the four main domains that they’re looking at is physical functioning emotional functioning social functioning and cognitive functioning in in as I mentioned there are some certain subtypes on there and there’s also what’s called the family impact quality of life survey and they look at also communication worry from parents daily activities and family relationships and so in a study done by Romaine Johnson’s group back in 2023 they looked at quality of life surveys specifically the Peds QL family impact and pass them out to kids at the time that they got the trach and then followed them over time they had 66 separate caregivers from index to follow up and they collected those things what they saw is that acute versus long-term quality of life in these kids were actually similar now while from an the emotional tool that got better that’s also part of our defense mechanisms as a as a parent as a as a human – we’re gonna adapt to that emotional part but a lot of those other things did not significantly changed they then compared these to healthy children and it was quite a bit less in those parents and patients who had a trach hi good afternoon I’m dr. Fazley from Vanderbilt Children’s at Nashville in Vanderbilt so excited to be here and this afternoon will briefly speak for a few minutes about the quality of life and invasive every management and okay so for the purpose of this talk I think invasive area management will talk about tracheostomy as we know that it is indicated in the management of complex medical conditions including upper area obstruction prolonged ventilation and reversible neuromuscular conditions when we talk about quality of life dr. Smith has really set us up well in the term of understanding the quality the quality measures tools which we have just as he has mentioned that there are number of tools which we use for surveys so that we can give it to the children and the parents to establish the quality of life measures just to I will not go in details just so that we know broadly there are four different things which we look at and then there are sub they are divided into different tools will be divided into different things physical functioning emotional functioning social functioning and school functioning so in children we know that in children with central area obstruction that quality of life is poor so this paper from Spain in 2023 looked at hundred nine preschool children to see the central area obstruction and etiology varied but most commonly it included laryngomalacia subglottic stenosis and congenital tracheal stenosis tab call is another questionnaire which is done for quality of life measures and it is geared toward preschool children and and it is when it was administered essentially the study found out that across physical social and cognitive and emotional functioning and the scores were very low and specifically in terms of respiratory anxiety and conduct but next thing which we need to think is that consider whether we need to consider is how our intervention is affecting the our patients quality of life in a digestive and we know that severity of illness affects the quality of life among our a digestive patients and relative to children with chronic diseases without event there is a worse quality of life and psychosocial status both in patients and parents invented patient and if we look at a digestive patient with what says without with or without tracheostomy we will see that across the piece you well assessed the same emotional social and school functioning scores but they are worse in they are worse in physical functioning scores so when we when we look at our quality of life in invasive ventilation then the two things come in mind is home versus hospital care and we know that quality of life is much better at home as we know from the studies that home ventilation is linked to better sleep quality nutrition and cost efficacy relative to the long-term hospital care and you can see the disparity between the cost so if we look into now summary this is a kind of an inverse pyramid if you want to look at it that the bottom is the central area obstruction without any advanced airway in place and they are the worst of the scenarios and these are the ones who have not been yet managed or they don’t have an invasive airway in place so in order for us to make their life better the first thing is whether these patients are are to be trained and then if trach then they will be on hospital ventilation that is one step up then if we go forward then the step up will be there to convert the hospital went into the home vent so that they can go home so this stepping up which we want is making the quality of life better and if that is the case that is our goal in a digestive clinics in multiple multidisciplinary clinics to make things happen and in the end the best outcome will be if the aero digestive in the aero just patient not requiring a trachostomy or they are decanulated in the end so as we are talking about stepping up the quality of life there are certain things which come in consideration of each other one of them he mentioned is resource limitation and if you are practicing in an environment where there are really resource limitation then the question will you will pose to yourself it who are the or we as a team will pose is who are the people who will benefit from intervention and whether and the answer might be that they might come up with a survival who will have the better chance of survival and who will have the better quality of life with our intervention so so then we look at invasive ventilation is there is resource intensive of course we all know that that it is resource intensive because we take care of these patients every day both in the hospital and and and at home the mean to median cost just in pediatric and USA pediatric trachostomy in USA is five hundred thousand to eight hundred thousand respectively and despite our challenges we go ahead according and make the quality of life better for the patient so that they can breathe better and we can ventilate them better and despite in Canada the cost of invasive home ventilation was this is an older study both of close to nine thousand dollars per month but non-invasive home ventilation is about four thousand dollars per month and to know that in Canada the sixty percent is publicly funded so it might be there might be a variance from peer system to peer system the biggest the most important factor which we look we should be considering also is the socioeconomic disparity and we know by studies which we know is that lower socioeconomic status patients get ten months delayed in decanulation in comparison to the highest socioeconomic status and that is a data and so then we yeah so in the end the last the last slide which I want to make sure that as as a group we we know this this is talking to the choir is creating consensus protocol with multidisciplinary approach approach can improve the quality of life and not only quality of life but also cut down the cost tremendously aims of the consensus protocol for tracheostomies will be optimized goals of care across disciplines and care teams increase provider and caregiver collaboration and communication avoid tracheostomy complete complication and this we all should least to increase likelihood of successful decanulation from 68 to 86 percent and hospital length of state decreased from 37 to 26 days so in summary I think the quality of life and the resource limitation are the things which you should be considering very closely when we are making the decisions about taking care of these patients and how to improve the quality of life of these patients thank you [Applause] [Music] problem is the disease the patient has that we won’t be able to change in the short term also the environment in which he moves will be complex as well particularly in Chile we have differences between the public and private system that could trigger a differentiation between our patients and this has an impact regarding how empowered are the parents when they decide to do an intervention or not because they have they have the limitation of the public health of system and this contributes to the decision to a decision that needs to be looked at from different perspectives the literature mentions many interesting things in qualitative literature and the caregivers in this study carried out in 2020 by dowel reflects five big topics that should contribute to making a more informed decision by the different stakeholders of the health system one point one local good point is that caregivers have the perception that they are in an adequate path regarding the treatment provided to their children this will depend on social determinants but in general you can achieve it another important point is that there should be strategies that increases caregivers participation in decisions that will lead a child to tracheostomy in the long term on the other hand there are many barriers that are related with emotional stress that our patients might have and the lack of understanding of some concepts i will share with you some strategies that might contribute and how the perception of the emotional stress will vary between the father and the mother and sometimes the rest of the participants of the family and a good communication with the medical team and the health provider will facilitate success and the last item if we do not have a team a well-trained team a nursing team the possibility of success of this procedure of this complex procedure will certainly be more difficult this article mentioned some strategies first improve communication we know that the child with a chronic disease has a better communication with regard or as compared with the medical team with regard or with the medical team then you need to know the environment you’ve got to understand that the pathology many times is unique and that you must train in concepts like tracheostomy and repeat over and over again the consequences of management of this tracheostomy patient and never force towards a decision other possible solutions you might have is to give the answers to the caregivers when they mention their concerns to allow maximum time possible for them to take an informed decision and of course put all the equipment in the decision the payer is a more difficult part but the medical team the nursing team and the other professionals should participate in the informed decision to help that and connect these parents with other parents that maybe have had the same experience and that might contribute to managing the situation in a better way also this interesting study showing fundamental domains that can or could help maintain or make a better decision this is written from the point of view of caregivers not from our point of view and in this study from 2022 the families report that the social networks have become a good communications niche especially amongst relatives or with other families nonetheless these decisions vary depending on the role of that family member if the mother makes a decision with the father the mother is the one that has more power there a single an absent father a single mother the behavior will be different and a single father will also make a totally different decision even when mother and father are together even the fathers in general we are more irrational so mothers tend to make better decisions and that is in everything in life another important point is the health provider the whole medical team they are the ones that have to help the fundamental role of nursing supporting the whole team and providing support to the team and they are the ones that help and that can contribute improves the relationship another thing we forget is to have material to help to learn this is a tracheostomy this is a model this is how you do it this is how you manage the cuff get acquainted through educational material contributes to persons being more familiar and less scared when they have to manage this type of device connect with other parents with tracheostomy children this is an experience that can be helpful and the longer term the experience is the better and sometimes not only this kind of connection but with foundations that might contribute and that have trained staff and the big problem we have i don’t know if it is a solution i see it as a problem the strategy of doing internet dr google is there for many things and there then they read this and they tell the medical team look i saw an internet this or that and that has led to catastrophes in the decisions i recall a patient who asked for a tracheostomy because tracheostomy allowed to handle secretions better he had lots of secretions but without tracheostomy he had non-invasive ventilation only at night and with tracheostomy he needed permanent ventilation 24 hours because the muscle function that allowed him to function a little better he lost it because it was it became hypertrophic so to conclude always consider what the patients wish and believe education is key from the oral point of view to repeat over and over or showing educational material and a well-trained and committed team that improves results thank you very much okay thank you to everyone for all those perspectives and i think well i what i want you guys to think about is with all of the measures that they just described and all the considerations we come up with these wonderful programs and we try to communicate as a team but at the end of the day sometimes we say well where was the family still is upset or they it’s not working and for all of us still to take the accountability and question ourselves of what are we missing what is the perception of the family and what are those holes and how are each of us contributing so we’re going to shift for a second and just go we’re going to wrap up with a case okay so this is a patient who has carry malformation that he had waxing and waning of his vocal cord function bilateral paralysis and paresis at times and he ended up needing to have some procedures that ended up having him have a tracheostomy he was an avid surfer and hockey player and wonderful supportive family and after his hospitalization he said well when he was in the hospital he had his trach he was able to get decannulated and we prematurely sutured his stoma so he could get out back out onto the water so that raises the question okay what is the safety of his swallow is it okay for him to go back out we all talked and felt okay you know what based on everything that we’re seeing we want you to get out there we think you’re going to be okay we had gone over some precautionary measures and here he is he goes out and after a few times he lands back in the hospital with pretty significant pneumonia and so then it lands us to say did we contribute to that what could we have done to prevent that was that the right call and the other question is can he go surfing again so in our air he gets discharged and his lungs heal we see him in the air digestive clinic and so from the patient’s perspective he’s saying well can I still go surfing and if I aspirate am I going to get sick how can I protect myself and do you think I’m going to be okay so to the panel I’m just curious whoever wants to answer how you would approach this you know from a pulmonology perspective and T just what do you what would you be considering with this family stop surfing no I’m just kidding so I think difficult question to answer because again the you want the wishes of the child of the patient also in mind how to make it safe you will answer some questions and clarify it that what aspiration means and how much is bad and worse small amount of water we all aspirate every day and not a big deal but if you get a tons of it in your lung of course it’s going to cause airway clearance and ciliary problems so I know that I don’t have an answer for that but is there any device like people go for snorkeling and they have this mask and can he put that thing on his can that device be somehow the altered and put it on the mouth while he’s surfing so that he’s not aspirating but at the same time he’s safe but he’s enjoying his time whatever time he wants to go in surfing that is the only thing I can come up with at this moment yeah sure I guess I have a few questions before getting to the can I still go surfing would be back to the aspiration and some of the causes and so I think I understand that this is quality of life panel but I think it’s important to talk about with your patience about what are some of the underlying problems and how could that be contributing to you potentially missing or or having complications with those things that you enjoy doing whether it be from a neurosurgical standpoint with the underlying Chiari or whether from a dysphagia and airway protection standpoint could there be anything done then then after getting that information I think to your point about kind of thinking outside of the box with surfing is is is nailing down what is important to them and and I think that clarifying with not only the patient and the parents about what is important to them but even potentially even saying well it this could be your life if you do this are you okay with that and in trying to put some of that autonomy back on them not saying that we would that you would go ahead and do that but but but but making them be a little bit introspective about their own care and in in taking ownership of that of saying you know what after thinking about it I don’t want to do this or I do want to do this so I I think I think giving them the autonomy to be able to think about some of those ideas and in making sure that it’s not just done in a single clinic setting making sure that they have time to go home think about it sleep on it and that goes to any type of important decision and then following up with them about that conversation I think that that’s a great point so many times our patients and our families just want the answer we don’t always have it and they want they don’t want to have to blame themselves if something happens and so we just have to own it together with them but then again turn it back on to them and say what do you really want and you’re aware of these these consequences do you have anything do you want to add yes I think that that we need to empower the family and the patient and the patient is the final word I think but maybe we train the family in many different options I think it is not necessary to serve in California maybe in a soft see maybe this is an option adapt the sport I think that is possible so things that we thought of as an aerodigestive team was should he we don’t know should he go surfing or shouldn’t he how severe is his dysphagia what can we do to actually help protect him and ahead of time so he has those strategies and then if he gets has a wipeout and that’s what his biggest concern was like if I get just thrown off no matter how prepared I am what if and yeah what if and that’s a real that’s a real concern and he wants to know am I going to be okay so this is his swallow and no we’re not looking at just liquid dysphagia in controlled sips and he was aspirating thin liquids a lot of times it was before the swallow he did okay with some thicker liquids but that’s really irrelevant to the question of surfing what we wanted to do though was figure out using fees and different strategies he was a really smart kid and that’s going to be different if you had a patient that was not able to implement specific strategies and so some of the things that we did with some diaphragmatic breathing being able to get your breath control better being able to realize how you can optimize how he could optimize his swallow just in in general so that when he went out there how he could could serve energy and even anticipate if he was gonna end up having a big wave coming what he could do airway clearance and being able to see what is the status of his vocal cords right now does he have some movement can we get a little bit of false vocal cord involvement and being able to have him use some compensatory strategies to be able to clear and protect himself a little bit better and then condition wise of if he’s going to go out and we just had a storm we know conditions because of the runoff into the ocean that it would not be ideal would be a higher risk of infection if he was gonna aspirate so as a team we sat and said okay these are the things that we could do and overall how he’s feeling to be honest with himself of how have you been feeling has he been more tired and and then not going out when it’s when there are gigantic swells as well and in the end after we discussed all of that what he needed was encouragement from the team and we talked about that and said we’re all a little concerned he knows the risks but he also needs our confidence and he needs to feel like we’ve got his back and so there he is and he goes intermittently and he’s still nervous and he comes it’s going okay and he’s happy about it but he he’s still apprehensive as he should be but he’s able to engage in and really enjoy so we’re gonna end there we have another case but we don’t have time for that does anyone have any questions for the panel before we end [APPLAUSE] (audience