Building a Pediatric Tracheostomy Program
Pediatric tracheostomies are unique from adult tracheostomies in that the majority of pediatric patients who receive a trach will retain it throughout their childhood. Therefore, management of pediatric tracheostomy patients requires a long-term commitment from the care team. Otolaryngologists Dr. Gopi Shah, Dr. Ashley Agan, and Dr. Romaine Johnson discuss the essentials of building a successful pediatric tracheostomy program and the importance of a multidisciplinary team.
We’ve provided the highlight reel below, but you can listen to the full podcast here.
The BackTable ENT Brief
The triage and management of pediatric tracheostomy patients must be approached through the lens of long-term care.
Essential members of the multidisciplinary pediatric tracheostomy team include pediatric pulmonologists, advanced practice nurses/nurse practitioners, respiratory and speech therapists, as well as social workers and case managers. These team members can assist in the identification of patients who would benefit from a tracheostomy in the long run, as well as facilitate the education and management of patients and their families with regards to vent care, feeding, communication and much more.
Dr. Johnson describes his multidisciplinary clinic set up through which patients are able to see all members of their care team at a single visit. Beyond the convenience for patients, such an approach also allows for effective communication between all members of the team.
Disclaimer: The opinions expressed by participants of the BackTable ENT Podcast belong solely to the participants, and do not necessarily reflect the views of BackTable ENT.
Differences between Pediatric and Adult Tracheostomies
Dr. Shah and Dr. Johnson discuss the major differences between pediatric and adult tracheostomy patients. In pediatric patients, post-tracheostomy care will often continue throughout their childhood.
When you come into your fellowship, all of a sudden, you are jumping in to the Children's Hospital world, the peds world, and I didn't realize the nuances between, major differences actually, between pediatric and adult tracheostomy not just obviously the surgeries, but in terms of care and management.
You raised an interesting point when you talked about the differences between the adult world and the pediatric world. And I'd had a thought that one of the big differences is that, in the adult world, when you place a tracheostomy in a patient, it is kind of the end of life right? They've had a stroke, or they have a major health event, and now they're in the hospital on a vent. And that’s after cardiac surgery or something like that, and they need a trach. But they're usually older, and they're sicker and a lot of times they wind up going to rehab, and you never really, you don't follow along those patients’ long term.
Where in pediatrics, it's often the beginning. So they're doing their trach when they’re six months old, nine months old, a year, almost 80% of the trachs we do at children's, they're under a year. And the average time it takes to decannulate a child is two and a half years. So I'd say the median time is at least two and a half years, but only about 30% of our patients ever get the trach out. About 15% pass away, so the majority of patients where you put a tracheostomy tube in, they keep the trach throughout their childhood. So if you put a trach in a child who's six months old, or a year old, oftentimes, you're going to be following them until they're an adult, if you practice that long…So I think that you raised that very interesting point in terms of the perspective of tracheostomy, it really is a long term care issue. So you're dealing with a long horizon of how do you manage this child with the tracheostomy as opposed to the adult that they're probably, you're going to see him once or twice if ever after you put the trach in.
Members of the Multidisciplinary Team
Dr. Johnson outlines the essential team members needed in the multidisciplinary care of pediatric tracheostomy patients. He describes the important role that advanced practice nurses/nurse practitioners play in the triage of potential pediatric tracheostomy patients. He also mentions the need for respiratory and speech therapists to assist with vent education and feeding and communication services respectively. He also states that social factors can complicate the care of patients, and therefore, social workers and case managers are very important members of the team.
So the first challenge is really trying to decide who needs a trach? … So having someone who can go and evaluate the patient, and really determine, okay, is this patient a good candidate for a tracheostomy? So in our team, it's a nurse. She goes to the patient's bedside, examines the patients, and she reviews the charts, and she also talks to the family. And she gets a feel for okay, is this a good situation? And will this improve the quality of this child's life? Because sometimes the answer is no, we really need to talk about other ways to deal with those life issues. … But the nurse or if it's an APP, and another thing like a physician assistant, you need someone to help you determine initially, is this a good candidate for the long run?
So now for our team, we have another nurse who primarily works on the inpatient side, and she does a lot of the teaching. She really spends time with the family, helping them and guiding them to learn how to take care of a child with the tracheostomy too.
And then we also have a respiratory therapist. And so the respiratory therapist is there, can help teach them how to do a vent. Like what steps are needed to manage their child on a vent. He can help them how to understand suctioning and just delivering respiratory medications and things like that. And then those three individuals, they primarily work on the inpatient side. And so one of them … also does some outpatient stuff, too … and has an outpatient clinic, that helps bridge the gap between inpatient and outpatient. But on the inpatient side is mostly those three individuals [two nurses and respiratory therapist] working together to provide care for the children. And then we have … our speech therapist. She does inpatient work too, but not as much as the other three. And what she does on the inpatient side is she kind of makes sure that, one that the child is receiving speech therapy services, and feeding services, learning how to eat, as well as seeing whether or not they're a good candidate for one-way valve usage. So we can work on some communication, if the child has the ability to communicate.
But yeah, I think finding people, you have to have a nurse, you have to have a pair of respiratory therapists or a speech therapist, you have to have those components involved. And the other things that we don't have that we use a lot, at least they're not dedicated to the airway program, are social worker and case managers. Because you can imagine the social work situations can be profound if you have a family that lives on the third floor of an apartment building. And now they have a kid who's on a vent and in a wheelchair. How do you manage that?
Maintaining Effective Communication and Collaboration in a Multidisciplinary Team
Given the different members who make up the multidisciplinary team required for the care of pediatric tracheostomy patients, effective communication and collaboration are necessary to deliver optimal care. Dr. Johnson discusses a multidisciplinary clinic set up that allows his patients to see all of their providers at one time. The added benefit of such an approach is the ease with which decisions and ideas can be shared between all providers on the multidisciplinary team.
…. How do you interface with the team? How regularly, what does that look like?
… So we have a standard once a month meeting, where we sit down and we talk about all the issues related to the program. And then we can have any ad hoc meeting as we need. And then I share clinics with … the speech therapist and the nurse who spans inpatient outpatient care. We have a multidisciplinary clinic. So I see them all the time. So you know, we have trach clinic just with kids … not on a vent. We have that twice a month. And then [our advanced practice nurse] also has her own clinic and I'm there at the same time, I have a feeding clinic and so when she's having a trach clinic, I'm in the feeding clinic, but I can be consulted for any patient.
And then we also have another multidisciplinary clinic. This clinic is at Cityville, which is a campus, up the street from the main hospitals, kind of across from the train station in Parkland. And that's our vent clinic. And so that clinic, they see a pulmonologist, these are all kids on a vent. They see a pulmonologist, they see me, the nurse, my nurse practitioner, my nurse assistant is there, I have my personal nurse there, our speech therapist is there, we also have our, there's a dietician, there's a respiratory therapist, it's a big group of people. And we see 10 to 14 patients twice a month in that clinic. And these are all vent dependent patients from all over the city.
So we have at least four or five trach clinics a month that are multidisciplinary. And so I meet often with them during those times. So there's a lot of communication and interaction and work. Yeah, they take care of a lot of the inpatient stuff … But yet, and still every time they write a note, they send it to me, and I co-sign it. If they need my help getting a patient scheduled for surgery, then I'll do it, that kind of thing. So there's still, even though we only meet once a month, there's a lot of interaction and meeting.
Yeah, that's awesome, I think multidisciplinary, I'm sure for those families that's such a huge convenience factor for them to be able to see multiple providers during one visit. And then on our side of it, I'm sure it's helpful to be able to be in a place where you can be more collaborative and see the people that are kind of working with the patient as well.
Dr. Romaine Johnson is a practicing pediatric otolaryngologist and Associate Professor of Otolaryngology at UT Southwestern Medical Center. Dr. Johnson serves as Director of the Children's Health Airway Management Program, and he is currently the Director of the Pediatric Otolaryngology Fellowship program at Children's Medical Center Dallas.
Host Dr. Gopi Shah is a practicing pediatric otolaryngologist and Assistant Professor of Otolaryngology at UT Southwestern. Host Dr. Ashley Agan is a practicing general otolaryngologist and Assistant Professor of Otolaryngology at UT Southwestern.
Cite this podcast:
BackTable, LLC (Producer). (2020, September 4). Ep. 05 – Pediatric Tracheostomy: The Long Game [Audio podcast]. Retrieved from https://www.backtable.com/podcasts
The Materials available on the BackTable ENT Blog are for informational and educational purposes only and are not a substitute for the professional judgment of a healthcare professional in diagnosing and treating patients. The opinions expressed by participants of the BackTable ENT Podcast belong solely to the participants, and do not necessarily reflect the views of BackTable ENT.